#alsawarenessmonth

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#stopals #alsawarenessmonth #als #fuckals

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ALS Awareness Month 2024

During ALS Awareness Month, the focus is on raising awareness for Amyotrophic Lateral Sclerosis.

Let's unite to make a meaningful impact in the battle against ALS this month.

ALS Awareness Month: Join the Fight Against ALS - HopeforSpecial

This ALS Awareness month, join us in the fight against ALS by increasing awareness and honoring the affected people #ALS #ALSawareness #MayI

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Welcome to Connecting ALS.  This week, Mike and Jeremy are joined by Sue Seabrook; a wife, a mom, a sister, and a caregiver for her mother living with ALS. Sue talks about the ways her family is embracing all the moments that matter in life. Read more about the moments that matter to Sue at https://www.als.org/blog/my-mother-heartbeat-our-family This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy talk to Dr. Melinda Kavanaugh, a clinical social worker and associate professor at the University of Wisconsin-Milwaukee, about the impact ALS has on kids, teenagers, and young adults. Dr. Kavanaugh discusses her research talking to kids about the roles they play as caregivers and ways to empower children in families affected by ALS. To learn more about Dr. Kavanaugh, check out her university bio https://uwm.edu/socialwelfare/people/kavanaugh-phd-lcsw-melinda-s/ To access the books Dr. Kavanaugh wrote for kids, teenagers, and young adults impacted by ALS, go to http://www.alsa.org/als-care/resources/publications-videos/youth-education/ To take the ALS Youth Challenge, go to http://www.alsa.org/fight-als/youth-challenge/ To learn about Sydney Carroll’s Youth Challenge fundraiser, go to https://alsadotorg.wordpress.com/2020/05/12/challenging-our-youth-to-join-the-fight-against-als/#more-6730

Find a transcript of this episode soon on Tumblr. This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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Welcome to Connecting ALS.  This week, Mike and Jeremy talk to Mark Calmes, vice chair of The ALS Association Board of Trustees, about the Jane Calmes ALS Scholarship Fund, which is currently accepting applications from people affected by ALS who wish to pursue college degrees or vocational certificates. Last year, the scholarship fund awarded $225,000 to 45 students across the country. One of those students is Ryan Pogemiller, a student at Arizona State University. Ryan and his mom, Allison, join to discuss how ALS impacted their life and how the Jane Calmes ALS Scholarship Fund is helping Ryan honor his father’s legacy. To learn more about the Jane Calmes ALS Scholarship Fund, read http://www.alsa.org/fight-als/calmes-als-scholarship-fund/ Click here to donate to the Jane Calmes ALS Scholarship Fund https://secure2.convio.net/alsa/site/Donation2;jsessionid=00000000.app20096a?df_id=39255&mfc_pref=T&39255.donation=form1&_ga=2.226991709.1756288973.1588190032-349483217.1580497749&NONCE_TOKEN=1B41CDAF669428FD6B5B9631D50C7A84 Read about the inaugural class of the Jane Calmes ALS Scholarship Fund here https://alsadotorg.wordpress.com/2019/09/19/inaugural-class-of-the-jane-calmes-als-scholarship-fund-hails-from-25-states/ As mentioned at the beginning, listen to ALS Association President and CEO Calaneet Balas talk about managing during a crisis on the Business of Giving https://denver-frederick.com/2020/04/23/als-association-ceo-on-managing-through-a-crisis/ As a reminder, May 10 is Mother's Day and we've been thinking it would be great to share some amazing stories of moms in a special episode. Simply record it using a voice memo app on your phone and e-mail it to [email protected]. We'll collect these stories together and share some of them on our Mother's Day episode, which will come out on May 7th. For quick instructions to record a voice memo visit: http://webmn.alsa.org/site/DocServer/How_to_record_a_voice_memo__Connecting_ALS_.pdf/428545705?docID=136253&verID=1 This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

Transcript:

Ryan Pogemiller: Seriously, the scholarship just gave me the opportunity to make my mom proud and to know in my heart that I was carrying on a legacy that my dad had left behind and to continue to make him proud too.

Mike Stephenson (in-studio): Hi everyone and welcome to another episode of Connecting ALS. I am one of your hosts, Mike Stephenson, coming to you from the Twin Cities of Minnesota and I'm joined by my cohost in North Carolina, Jeremy Holden. Hard to believe that we are about to be in May and as many of you know, the first day of ALS Awareness Month. 

You'll be hearing from us and our colleagues at The ALS Association about the urgent and ongoing work being done in ALS research and advocacy and care services to make sure that the pandemic doesn't stand in the way of progress.

Jeremy Holden (in-studio): Yeah, that's right. I think Calaneet, CEO and president of the Association, said at the outset of this public health crisis that ALS isn't taking a pause while we deal with the COVID-19 pandemic and so it's as just as important as ever for the mission to go forward, and we'll be talking quite a bit about that in the coming weeks.

Mike Stephenson: Absolutely. Stay tuned for some interesting content from both Connecting ALS and The ALS Association during ALS Awareness Month, and speaking of compelling content -- you mentioned Calaneet -- we wanted to give a shout out to the Business of Giving a radio show in New York and blog, which is hosted by the very talented Denver Frederick. Denver interviewed ALS Association president and CEO Calaneet Balas last week about managing through a crisis and how the Association is responding to the pandemic.

Mike Stephenson: It was a great conversation and we encourage you to take a listen. We'll post a link to that interview in our show notes for anyone that wants to check that out. All right. For this week's episode of Connecting ALS, we spoke to Mark Calmes about the scholarship fund he created in honor of his late wife, Jane, and the lives that fund is changing all over the country, including those of Ryan Pogemiller and his mother Alison. After we spoke with Mark, we connected with Ryan and his mom about why Jane Calmes Scholarship Fund is so meaningful to them.

Jeremy Holden: Yeah, I thought it was great to hear from from Ryan and Alison, but just you know, thinking about Ryan and you know, Mike, you and I are a little bit older than he is, but we were certainly at that time were leaving high school thinking about what do I want to be when I grow up? What's the next step? And you know, I think, I don't want to give too much away, but Ryan is thinking way more advanced thoughts than I was going into college. And you know, to think that because of some of the devastating impacts, both just emotionally and financially, that ALS brings to a family that his path forward might not have seemed so clear. But again, a bright student, an honor student, and just fascinating to hear how he's taking this opportunity and his plans for the future.

Mike Stephenson: Yeah, he has a very, very good head on his shoulders and definitely more mature at that age then that I was probably, we were Jeremy, so looking forward to hearing from him in that interview. But first, as I mentioned, we're going to kick things off our conversation with Mark Calmes. Let's hear how that went.

Jeremy Holden: We are pleased to be joined today by Mark Calmes, vice chair of The ALS Association Board of Trustees. Mark, thank you for being with us today.

Mark Calmes: Thank you for inviting me back guys. It's a pleasure being with you.

Jeremy Holden: Yeah, some of our listeners probably recall having heard from you and so we're, we're happy to have you back to talk about a really important issue today. But before we get into that, for some of our listeners who don't know, you, tell us a little bit about your connection to ALS and why you serve this community.

Mark Calmes: Yeah, I'd be happy to. So my late wife, Jane, was diagnosed with ALS in June of 2009 at the Mayo Clinic in Rochester, Minnesota. And during our final session with clinic staff, we were given information about the ALS Association and about the St. Louis Regional Chapter, which was the nearest chapter to us at the time. And importantly, the St. Louis University ALS Clinic. And so from there I started to learn as much as I could about ALS and The ALS Association. And then after that in 2010 the family formed a Walk to Defeat ALS team that we named Jane's Angels. And that team is now in its 11th year and we have raised nearly three quarters of a million dollars for the Association. That's something I know I am my kids are very proud of. And then over the ensuing years I became more known to and involved with the St. Louis Chapter.

Mark Calmes: And as a result of that, they nominated me to become a trustee on the Association's national board of trustees in 2014. I was elected to the board in February of 2015 and I've served on the board since in several capacities and in several positions. And I also serve as a member of the St. Louis Chapter's board of directors. So I've been heavily involved with the Association in that regard. And then after an eight year battle with the disease, Jane passed away in August of 2017, and prior to her passing, I promised her that I would do all I could to help eliminate this devastating disease. And it was really an easy promise to make after having been a caregiver for eight years and seeing firsthand that devastation as well as seeing it in many other PALS and their families and caregivers that I have encountered over the past 10 plus years of my involvement with the disease. So that's why I serve and getting to serve with other tremendously talented, dedicated, and wonderful volunteers and staff at The ALS Association such as you guys. It's been extremely rewarding and a blessing for me.

Mike Stephenson: Well, Mark, we really, we can't thank you enough, certainly not on this podcast for all that you and your family have done for the cause and for The ALS Association for so many families like yours who have been impacted by ALS, really, really tremendous body of work that you've done on our behalf over the last -- more than a decade, really. Today we want to talk to you about the scholarship fund, specifically. A little over a year ago now, you made the decision to create the Jane Calmes ALS Scholarship Fund in honor of your late wife to benefit students who have lost a loved one to ALS. Why was it important to you and your family that this educational component be a part of Jane's legacy?

Mark Calmes: Well, Jane battled three major illnesses during the last 11 years of her life. She battled a heart condition, breast cancer, and then finally ALS. And she waged those battles with great courage, determination, and will. And yet she did so with unbelievable grace and kindness and empathy towards others that were similarly affected. So when I decided I wanted to honor her and her legacy, I knew that she would want me to do something that helped others as she and I had done before she had died. And as I worked with the Association on ideas, education surfaced, and it immediately resonated with me. Jane was always a education advocate. She was a great student herself, graduating magna cum laude from Wichita State University. She insisted all of our kids get college degrees, which they did because she knew what the benefits of education did for her and for me and the successful careers we had in the good life we had established. And then lastly, she was a volunteer at an afterschool program where she taught kids and helped them with their homework. So I chose education and knew there was an immediate unmet need for educational funding within the ALS community. And I also knew that Jane, while she would be tremendously embarrassed at the attention that she would be immensely proud of what we were doing in her name.

Jeremy Holden: I'm sure she would be proud and I want get into the first year and what we saw coming out of that. But first I want to talk about an interesting component about the scholarship fund, which is its commitment not just to what we think of as college -- traditional four year degree granting universities -- but also two year programs, community colleges, vocational education. Why did you think it was important to think expansively about the education that would be funded through this program?

Mark Calmes: Well you kind of just said it yourself. To be inclusive is very important and we don't want to leave any students behind. So you know when, when we are young, when any person is young, we all have dreams: what we want to become and what we want to accomplish in life. Jane, I and our kids all received four year college degrees and one of my kids received a master's degree also, and we chose that path because of the professions we are interested in pursuing. Well other students will have professions they want to pursue that require different paths, and those paths may lead to junior college or vocational school education. So if an educational institution is accredited, a student who receives one of the Jane Calmes ALS Scholarships may attend any of those institutions regardless of type. And thank you for asking that question because it's really important to me that all students have this opportunity.

Mike Stephenson: Yeah, it's really great to hear that and I know that a number of these scholarship recipients have appreciated that as will future scholarship recipients and kind of a good segue into talking about now that we're entering year two of the Calmes scholarship fund, the first recipients are putting their scholarships to use and wrapping up a year of schooling and you've been receiving applications from all over the country for this next round. If you could Mark reflect on that first year for us and kind of what you've learned and how things have gone for the program?

Mark Calmes: Yeah, that's a great question. Man, this first year has gone by really quickly and it seems just like yesterday when we were first discussing the possibility of a scholarship fund and when the first application period opened a year ago, we really didn't know for sure what response we would see. But based on demographics we have with the ALS community and what we believe was a huge unmet need nationwide, we thought there could be a significant response and that belief turned out to be true. We ended up with 133 completed applications and we had hundreds more that weren't completed for one reason or another. And out of that 133 we were able to award 45 $5,000 scholarships to students from 25 States. And of those students, about 30% were high school seniors and the other 70% were already undergraduates pursuing for secondary education. 40 of those kids that had gotten an award, had a parent or have a parent with ALS, four had a grandparent with ALS and we had one person with ALS apply and receive an award.

Mark Calmes: So those are pretty much the stats on the first year. But to your question in regard to me personally, the first year brought emotions to me across the spectrum. I was very excited to see the fund established and do what was intended to do. It was a bit surprising to see that initial response even though we thought it could be significant and it has been extremely rewarding and emotional at the same time, especially when I read some of the thank you notes that have coming to the Association from award recipients. we have always known that there's a real and significant financial burden and pain in the ALS community. That's uh, that's been well documented. But the scholarship program has shined the light on part of that burden that has been somewhat hidden. And for that, I'm grateful that we were able to do that. However, well I have been excited and pleased with how this has started, I'm also still reminded there's still unmet need.

Mark Calmes: While we helped 45 students, 88 other students, 88 other kids didn't get an award. And to me that's unacceptable. Until we can meet a hundred percent of the need, I will always have a feeling of sadness and futility for those we couldn't help. So that's why I and the Association are working relentlessly to find additional funding. We beat the bushes and look for opportunities all the time. And I will do so for as long as I can do that. You know, you talked about the first year, so now we're in the application period for the second year and that application period will be open until May 18. So we're just halfway through that period. And yet we're already seeing incomplete applications come in at more than double the rate of all of last year. And this may be, yeah, this may be due to a more awareness of the fund. It may be due to additional financial burden caused by COVID-19 or frankly, it could be a combination of both of those. But nonetheless, it highlights the need for more funding. So if I can say to your listeners, if you have the ability to help change the lives of young people in a very positive and meaningful way, please donate to the Jane Calmes ALS Scholarship Fund.

Jeremy Holden: And we can provide information for how listeners can do that in the show notes. Mark, anything else you want to reflect on heading into the second half of the application period for year two and where the scholarship fund goes from here?

Mark Calmes: Well, as I said, we want to make sure the word gets out across the country, that students know that this fund exists. We want everybody to be able to have the opportunity to apply for it. But then, you know, as I've said a couple of times through this interview, funding is critical. Like all things in life, not much can happen without money and we do have this pretty significant unmet need. So we want to continue to increase the level of funding. We want this fund to become sustainable. You know, it doesn't do any good for when, when I disappear off this earth, that the funding all of a sudden dries up and the fund, goes away. We have demonstrated that there is a huge unmet need. We want to keep this ball rolling, we want -- and we want to enlarge that ball. And you know, as I said earlier, I'm not going to be satisfied 'til every student, every kid who wants a scholarship can get one. And that's just, you know, it's critically important in the, in the, in the journey, in the path of a family with ALS.

Mike Stephenson: That attitude is amazing. Mark. Thank you. And I do hope that you and the Association are able to continue funding the scholarship in this way. We're speaking to a young man later on this podcast about his receiving of the Jane Calmes scholarship and how it changed his life. And I've met a number of students who were recipients and they all said the same kind of thing, that it was so meaningful to them and really did help ease that financial burden that was brought on by their family facing ALS. So again, we thank you and are humbled by the work that you've done, Mark, uh, you and your family on behalf of families living with ALS.

Mark Calmes: Well thank you. I greatly appreciate it and I greatly appreciate having the opportunity to talk about this fund and with you guys and I'd love to talk to anybody else about it.

Jeremy Holden (in-studio): Thanks again to Mark Calmes for walking us through kind of the background, his connection to ALS and the initiative to help fund continuing education for a young people whose lives have been impacted by the disease. We're going to hear now from one of the recipients from the inaugural class of the Jane Calmes ALS Scholarship Fund as we hear now from Ryan Pogemiller and his mother Alison.

Mike Stephenson: We are on the phone today with Alison Pogemiller and her son Ryan Pogemiller and they are joining us from just outside Phoenix, Arizona. Thanks to the both of you for being willing to speak with us on Connecting ALS today.

Allison Pogemiller: Absolutely.

Ryan Pogemiller: Thank you for having us.

Mike Stephenson: So we want to have you on to talk about the Jane Calmes ALS scholarship fund as Ryan was a recipient of that scholarship and that program is now in its second year. So Ryan, we will have a bunch of questions for you about that specifically in just a few minutes, but we want to start with you, Allison, if you don't mind. And for the sake of our listeners, could you give us a little bit of background on your family's story and just how ALS came into your lives?

Allison Pogemiller: Yeah, sure, Mike. Well, as probably most families can understand with a diagnosis of sporadic ALS, ALS entered our life as a complete surprise and very quickly. My husband of 21 years named Jeff was 53 when he mentioned to me that he kept biting the inside of his cheek and he wasn't sure why. And he does a lot of presentations. So he was really noticing that he kept biting his cheek and a short time later, I noticed he would slur a couple of words here and there and many people might not think anything of those things, but even these really small things were out of the norm for him. He was an accomplished athlete. He was physically in impeccable condition and at the height of a very successful career in technology. I mean the man never got a cold, he never had a cavity. So all of this was out of the norm. So we immediately started what would be about five months of absolutely grueling tests and doctors visits leading up to that moment when everything we knew in the world came to a screeching halt and we got our diagnosis of, you have ALS.

Mike Stephenson: I can't even imagine what it must've been like to hear those words. I'm sorry that your family had that experience and to go through that with someone that you love. Unfortunately it's a story that many of our listeners are too familiar with.

Allison Pogemiller: Right.

Jeremy Holden: So where did you turn for support? What resources were available to kind of help you on the next steps as you began that journey?

Allison Pogemiller: Well, at the time of my husband's diagnosis, which was in early 2015, the type of resources that are available today didn't exist. We've made a lot of progress in the last few years. So I felt completely alone and lost. I absolutely couldn't grasp the situation that we were in. And in the beginning I couldn't even help my husband with what he might've been feeling, his despair and his fear in relation to this horrific diagnosis. Because I was drowning in my own feelings of terror and I was totally alone. 

So I spent seven months of the 12 months my husband lived with ALS on my computer or my phone, 24-seven trying desperately to find an answer that turns out didn't exist or some kind of way to prove the diagnosis wrong or really just any type of hope whatsoever. And during that time we saw a neurologist out of state, and that happened because I had been researching neurologists and he seemed to be on the cutting edge of things in ALS. And that's how we ended up traveling to California until it just got too difficult. And he helped us to get into an ALS clinic in Arizona. But I had no idea what a clinic was or that it existed at that time. And once we were a part of that clinic environment, I was introduced to many different kinds of resources and assistance. One of those things being my local ALS Association chapter, and I'm seriously not exaggerating when I say that my care services provider at the Association became my lifeline. And I honestly do not think I could have made it to the end of Jeff's journey without her help. I'm so forever grateful and I will spend the rest of my journey working in partnership with my ALS Association chapter to provide the most thorough resources, programs and information to ALS families. So nobody has to feel lost or alone.

Mike Stephenson: It's good to hear a Alison that you and your family found the Arizona Chapter of The ALS Association to be a helpful resource. They have a sterling reputation for a reason and I'm glad that, uh, they could be there for your family during extremely difficult time. And I know that you've stayed very involved in that organization and you're a tremendous help to them. So thank you for that as well. Let me ask at any point along the way, while you were seeking opportunities and resources like the one that eventually became available through the Jane Calmes ALS Scholarship Fund for Ryan, did you think that something like that on the educational side for your son that that might exist?

Allison Pogemiller: Well, thank you for pointing out how wonderful the Arizona chapter is because I agree with you. And one of the things that makes them so incredibly wonderful is they're really focused on the whole family and put a lot of programs and thought into the effects of ALS on the whole entire family structure. And I learned firsthand that an ALS diagnosis absolutely does not happen to a person, but rather to a family. So Jeff's journey with ALS was 380 days long. He's now free and has no fear, no anxiety, no pain. But the impact of those 380 days of tragedy re will remain a part of my journey and Ryan's journey forever. And those impacts have some serious consequences such as education. So similar to the world we're living in today, where people are saying, Oh, we're all in the same boat. It doesn't fit. I mean we're all in the same storm, but the boat we're sailing may be totally different than the boat of the person next to us.

Allison Pogemiller: And I can't even begin to imagine what that ALS storm did to my 15 then 15 year old son. But I do know it definitely took a toll on his ability to focus on school or even to care about school. And while he amazingly little bragging, graduated high school with a 4.0 and honors classes, the scholarships that we had always known would be available to him because he's always greatly excelled academically, just weren't there. And in addition, the loss of our, the loss of our financial head of household did not put us in a great situation when looking at colleges because Ryan has always, always wanted to go to various esteemed colleges out of state. So I, I could find nothing. I searched and searched and I could find nothing to help families in our situation until I came across this scholarship. So it truly opened up possibilities and changed what we were able to do.

Mike Stephenson: That's amazing. Thank you for that analogy too: the boat in the storm. That's really an interesting way to put it in. And so true, I think, for families living with ALS and then having these added layers of stress brought into their lives. We're going to shift over to Ryan and now to talk a little bit more about the scholarship experience. And Ryan, your mom just alluded to a portion of it, but when and how was it that you first heard about the Calmes scholarship fondant and how it might be available you?

Ryan Pogemiller: So as my mom was talking about just seconds ago, I've always had goals of going to colleges that I obviously could not afford at and she happened to stumble across the scholarship and I heard about it through her and it was actually the month of graduation. I went back and I looked in to see when I applied, and it was May of last year when I had just graduated from high school and because of my mom telling me about this scholarship is seriously how I found out about it because of her hard work with The ALS Association and she's much more knowledgeable about ALS, the Association. So I really owe it to my mom.

Jeremy Holden: What was your reaction when you found out that you would be receiving a scholarship through the program?

Ryan Pogemiller: I was beside myself with excitement. I was overjoyed. I was -- the excitement of knowing that I was able to go to college and get my education meant so much to me because growing up like that was all that my dad had instilled in me was go to school, get an education, and of course my mom played a part in that as well, but to honor my dad and carry on his legacy through education, that was something that was able to be offered to me through the Jane Calmes scholarship and I was very grateful to The ALS Association because I knew without them I wasn't going to be able to have that option open for me, you know? And seriously, the scholarship just gave me that opportunity to make my mom proud and to know in my heart that I was carrying on a legacy that my dad had left behind and to continue to make him proud to.

Mike Stephenson: Oh, what a beautiful way to put that Ryan. And it's so clear that your father had an influence on you in that way in your mom since she was bragging earlier. But I don't think it's writing to say to talk about you graduating with honors coming out of high school and clearly education was so important to you and it's great that you were able to continue your educational path and go to college using the scholarship as a part of your funding. Will you tell us, if you don't mind, uh, what you're studying right now at school and kind of where you're at on that path and, and what you're hoping to end up doing if you, if you thought that far ahead.

Ryan Pogemiller: You know, it's actually really funny. I've been on a very, um, tumultuous journey to figuring out what I'd like to study. I actually started out as an English major, but after hearing, "Oh, are you going to become an English teacher?" so many times I was like, I just can't possibly study English anymore. Like I just can't. I'm just kidding about that part. I realized there wasn't a good job outlook. Anyway. Currently I'm studying technological leadership and it's a new program that ASU is implementing and it basically has to deal with like inquiry and analysis of technological issues. And how will we fix them? So like a good example that my advisor and even the webpage gives is what are we going to do? Like what's the moon going to look like after human settle. And that's a very open ended question. No one really knows.

But technological leadership, the degree gives students the tools and the assets to solve questions like that, solve those questions that we've never had to answer before. And with working in all of that, it correlates with space, technology, all those things. And ever since I was a little kid, I used to have books of all the constellations, all the stars. I was obsessed with mythology, I loved everything to do with the stars. And so I'm studying technological leadership in the hopes that one day I'll get to work at NASA, the greatest way to work with the stars that's not physics, because I can't do physics really. And it was the non-math way to work in science and technology. So that's what I'll be studying is technological leadership. Sorry.

Mike Stephenson: Very cool.

Jeremy Holden: Yeah. And quite ambitious. But you know, it sounds like you're on the right path and I'm sure that our listeners have all the faith that you'll get there. What would you say to others who are, you know, maybe thinking about what do I do? How do I help fund college or thinking about applying for the scholarship? What advice would you give to them?

Ryan Pogemiller: I mentioned earlier how I was very excited about receiving the scholarship, you know? But that excitement didn't come without the anxiety of applying for it because I had never applied for a scholarship, obviously. I was a first year student, not even yet. I didn't even, at the time I applied for the scholarship, I had yet to even walk the campus. So I really didn't know anything about college. I didn't know what to expect. I didn't know how scholarships worked and I was scared. I didn't want to put in the effort to a scholarship and then get a rejection letter and just feel bad about it, you know? But you know what? All of that went out the window and I just said, I'm just going to apply because what do I have to lose? I apply. I either get in or I don't, but if I don't apply it, I know I'm not getting in.

Ryan Pogemiller: But at least with the application I have a chance to get in and my advice genuinely to other people is leave that anxiety at the door because when you leave it at the door, you can apply for the scholarship, hopefully get it, and then the scholarship opens up so many other doors. So it really doesn't matter how anxious you are. Put that aside, and I'm speaking from personal experience. As someone who's anxious all the time, scholarships are not as scary as they seem, and I thought they were terrifying, but I would recommend to use your resources. Don't be afraid to ask for help. You can use a community. Everyone wants to see each other succeed and we all succeed when we're doing that and helping each other. So really to my main point, my main advice is to just let it all go. Don't be scared. Just supply and hope that multiple new doors open after you've applied for your scholarship.

Jeremy Holden: So well put.

Mike Stephenson: Ryan. Yeah, yeah. I wish that I had your humility and logic when I was your age because I think I probably would have ended up with a better education. It sounds like you've really given your future a lot of thought and that you are very much on the right track. And we spoke with Mark Calmes, the founder of the scholarship fund and the husband of the late Jane Calmes earlier about, you know, the sort of students that are receiving the scholarships and some of the applications and letters that he's received. And you are exactly the sort of person that he was referencing in hopes that people just like you would be able to benefit from the fund and would go on to do amazing things. And just based on what you said today, I know that we don't know you super well, but it sounds like you have a really bright future ahead of you. So thank you so much for that insight.

Ryan Pogemiller: Thank you for having us, an opportunity to share our stories.

Jeremy Holden (in-studio): Thank you again to Ryan and Allison Pogemiller for sharing their story and the impact of the Jane Calme, ALS Scholarship Fund and of course Mark Calmes for his insight into the initiation of that fund and plans to grow it and make it even more impactful going forward. For those listening applications are being accepted now for the second year of the Jane Calmes ALS Scholarship Fund. So we'll share a link to that in the show notes and of course you can go to The ALS Association blog to learn more about that -- applications still being accepted for another ,couple of weeks.

Mike Stephenson: Thanks for mentioning that, Jeremy. Again, I am in awe of what the Calmes family has done for the ALS community and the Jane Calems ALS Scholarship fund is an incredible resource for students whose lives have been impacted by ALS. Great to hear from both Mark and the Pogemillers on their experience.

Some quick housekeeping here before we wrap the show. You may have seen that we put out a call earlier in the week for a story submissions ahead of next week's episode, which will be themed around Mother's Day. We're asking for stories about wonderful moms from families who have been impacted by ALS, and if you find us on Facebook or Twitter or visit connectingals.org you'll find instructions on how to record those messages and submit them to us. Our hope is to include a few of those stories on the show next week. Let us know if you have questions on that, but we're looking forward to hearing from you about what Mother's day means to your family.

Jeremy Holden: Mike, I'm glad you mentioned that because it is a good reminder that I still have to get a card and get that sent in the mail, so thank you for that.

Mike Stephenson: Yeah, it's sneaking up on us. All of a sudden it's going to be May, and then Mother's Day is here. So yeah, get those cards, get those flowers ordered. All right. It is time for us to stop rambling on. We would love it if you subscribe to the show at connectingals.org or wherever you get your podcasts and if you found us on social media to share your feedback about the show, that'd be great as well. This episode was produced by Garrett Tiedemann of the Minnesota, North Dakota, South Dakota Chapter of The ALS Association. Thank you so much for listening and we will connect with you again soon.

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May 10 is Mother's Day, so after you call the florist and get flowers ordered, grab your phone and share a reflection about moms and ALS. Simply record it using a voice memo app on your phone and e-mail it to [email protected]. We'll collect these stories together and share some of them on our Mother's Day episode, which will come out on May 7th. For quick instructions to record a voice memo visit: http://webmn.alsa.org/site/DocServer/How_to_record_a_voice_memo__Connecting_ALS_.pdf/428545705?docID=136253&verID=1 This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

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We're dropping a special bonus episode of the pod to address a developing issue that requires all of us to take action! The Centers for Medicare and Medicaid (CMS) have mandated that noninvasive ventilators (bipap) go through a competitive bidding process to set the price and award contracts to equipment companies (i.e. equipment companies submit bids on how much it will cost for an item; CMS takes the lowest bid and will only reimburse companies at that lowest price).  The problem with competitive bidding in this situation is that many companies will stop supplying the devices because they can no longer make money (or will lose money) by providing these.  This could make it incredibly difficult for individuals to get access to these devices and worse have access to a company close by that can repair them if something goes wrong.   To send a letter visit: https://alsa.quorum.us/campaign/20341/

Transcript:

Mike: We have an advocacy alert that we wanted to make the ALS community aware of so we have a bit of bonus content for you here on Connecting ALS. We're going to bring in an expert to bring us up to speed.

I'm here with Marianne Keuhn, VP of Care Services at our Chapter of the ALS Association, to discuss a pressing legislative issue for the ALS community. Welcome Marianne, thanks for the time today.

Marianne: Absolutely.

Mike: And just to bring everyone up to speed, back in early March The Centers for Medicare and Medicaid Services, or CMS as you'll often hear them called, announced that non-invasive home ventilators, a critical piece of life support for many people living with ALS, would be added to the competitive bidding program in 2021. 

This is a problem and Marianne you always have your finger on the pulse of these advocacy issues for the ALS community so we'll get deeper into it, but first could you explain for our listeners exactly what the competitive bidding process is?

Marianne: Sure, so competitive bidding is where Medicare will ask equipment companies to submit a bid on what a piece of equipment will cost. Now, normally this can be good because it can help keep prices down. So they submit the bids and then CMS will choose the lowest bid and ask each company to set that price so when they are getting reimbursements that's the price that they get reimbursed at.

Mike: Okay so on the surface, like you said,it sounds like the program has good intentions, but tell us why adding non-invasive home ventilators to the list will be an issue for many people with ALS.

Marianne: Yeah, so sometimes what'll happen is if you set these bids too low, so equipment companies can't get reimbursed at a level that will cover their costs. With respiratory equipment you need specialists who know how to use the equipment, who know how to repair it, and those services are also not typically covered by CMS so equipment companies are already kind of taking a hit to have a respiratory therapist available for these pieces of equipment.

Mike: Servicing and maintaining the equipment, sure.

Marianne: Absolutely, absolutely. So when you have a price set, that is at a level where companies may not be able to afford to continue to provide that product, then it makes getting access to it that much more difficult.

Mike: Got it, so adding ventilator to this list, this process, will actually reduce access for a population that is at extremely high risk for respiratory failure and I suppose that could ultimately mean more trips to the ER,longer hospital stays, fewer home care options, and then ultimately higher costs for Medicare and Medicaid, right?

Marianne: Absolutely, absolutely.It is a vital piece of equipment and being able to access it, being able to get to a company that can repair things when they go wrong, these are critical for people with ALS.

Mike: Okay, so we know, we recognize obviously that this is a serious issue what can we do as a community to speak out against it, who should we be calling,and emailing, and tweeting at?

Marianne: The simplest thing you can do is contact your members of Congress. You need to ask them, there are some Dear Colleague letters that are going around that they can sign on to that will ask The Centers for Medicare and Medicaid not to include non-invasive ventilation in a competitive bidding process, but simply just contact your members of Congress and say we can't have this on competitive bidding.

Mike: Because those Dear Colleague letters, those can go a long way in an initial stages like this, right?

Marianne: They absolutely can because it shows that more and more members of Congress care about this issue, are concerned about what impact this would have on people living with ALS, and that the more that we can get members of Congress united behind a situation like this, CMS will listen to us and hear those concerns and you know it can be as simple as they can make a rule change then and this can get resolved.

Mike: What exactly is a Dear Colleague letter?

Marianne: Yeah, so a Dear Colleague letter is a letter that is usually put together by a member of Congress that is sent out and he or she is asking other members of Congress to sign on and support whatever issue they are talking about at that moment.So, the benefit of a Dear Colleague letter is that it creates momentum and the more members of Congress that we can get signed on to an issue, you can collectively start pushing an issue forward.

Mike: Okay, okay, that makes sense. And I assume if people have questions about either the message itself or how to contact their local legislators they can get in touch with their chapter of the ALS Association for that help, right?

Marianne: Absolutely, chapters are a great resource.

Mike: Alright, thank you Marianne for shedding some light on a very important topic.

Marianne: Thank you for having me.

Mike: Just so everyone is aware, there is a deadline on these Dear Colleague letters that we just spoke of that is May 31st so if you're going to reach out to your legislator make sure that you do it before the end of the month. May 31st deadline for the Dear Colleague letters.

One of our goals with Connecting ALS is to make sure the community is aware of these kinds of legislative matters as they happen, so be sure to subscribe on your favorite podcast app or at ConnectingALS.org to make sure you're getting all the latest content.

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Welcome, everyone, to Connecting ALS, a podcast dedicated to all facets of the disease, that we will produce monthly from the headquarters of the Minnesota, North Dakota, South Dakota Chapter of The ALS Association, in St. Paul Minnesota.

For our debut episode, we had the opportunity to sit down with Ryan Tofteland to discuss ALS advocacy and his role as a voice for the community. We were able to connect with  Dr. David Walk from the University of Minnesota to get his view on the current state of ALS research, as well as his own work in the field.  We were then joined in studio by young ALS advocate, Serena Robb, so she could pose some important questions that have been on her mind. And finally, we chatted with Beau Bedore of the Minneapolis VA Health System and Kristin Wallock of The ALS Association about how smart home tech is changing lives. In conversation, Beau also mentioned some new research recently published in Nature. The article is titled Speech Synthesis from Neural Decoding of Spoken Sentences. This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

Transcript:

Serena: I think it's important to help the ALS Association to help people recognize ALS, know about it, and start finding a cure for it. And I just think it's really important because it just is.Like, if it's something that has no cure, then I think it's really important. A ton of people's lives are like sort of in a huge palm of your hand so I just think it's really important to just like step up and do it.

Mike (narration): Welcome everyone to Connecting ALS, a podcast dedicated to all facets of the disease, that we will produce monthly from the headquarters of the Minnesota,North Dakota, South Dakota Chapter of the ALS Association in St. Paul.

I am your host Mike Stephenson, I am the Director of Marketing and Communications at this chapter, but for the purposes of this podcast I'm just the person who asked the questions. Our hope is that each month we'll deliver information about the latest research and technological developments as they relate to ALS, keep you updated on national advocacy efforts, and first and foremost connect you to individuals and families who have been impacted by this disease. 

For our debut episode, we sat down with Ryan Tofteland who spoke with us about his experiences as an advocate and voice for the ALS community. We then met with Dr. David Walk from the University of Minnesota to discuss the current state of ALS research. Shortly after that, we had a very special guest in-studio;nine-year-old Serena Robb, who you heard of the intro of the episode. She stopped by to ask some questions about ALS that have recently been on her mind. And, finally, we met with Beau Bedore, who is an absolute tech wizard from the Minnesota VA, our own Kristin Wallock and I chatted with Beau about how smart home equipment is changing lives.

A few weeks back we had an opportunity to sit down with Ryan Tofteland who was diagnosed with ALS in 2016 and lives with his wife Martha and their two young children in Orono, Minnesota. Ryan and Martha have been extremely active in the ALS community and have taken a special interest in advocacy over the last year so, we spent the bulk of our time discussing his thoughts in that advocacy space. The following is how that conversation played out.

Mike (in Ryan's home): We are fortunate to be in the home of Ryan and Martha Tofteland of Orono, Minnesota and we are here with Ryan who is currently living with ALS and was gracious enough to agree to let us pick his brain about ALS advocacy efforts, which we will get into momentarily, but first Ryan, if you could,tell us a little bit about when and where you were diagnosed with ALS.

Ryan: Yeah, hi. I was diagnosed with ALS August of 2016 at the age of 36. For me, it started in my left foot. I was limping a little bit.We had a bunch of tests done, went down to Mayo and they confirmed it. Since then, kind of progressed up through the rest of the body. I'm full-time in a wheelchair now, my left arm has kind of lost most of its ability, and now I would say in the last two months you can hear my voice getting a little funnier than normal, so that's starting to go as well. So if, I'll do the best I can, hopefully you can understand what I'm saying.

Mike: No, no you're doing great. And as many of our listeners know Ryan, ALS is a disease where each day becomes slightly more challenging than the one prior.

Ryan: Absolutely

Mike: And, you mentioned your voice, has that been the most challenging thing of late for you physically?

Ryan: Yeah, recently that's the toughest part; especially with two young kids where Finn is seven right now, Liv is four. Reading to them at bedtime, it's getting me to be more of an adventure than it used to be and just, I think, I I tend to speak in shorter spurts now than I used to.

Mike: Understandably, and I suppose with the kiddos, when you when you need to kick that dad voice in, 

Ryan: Yes.

Mike: looking for that, are you

Ryan: It sounds more like this now (BEEP sound from wheelchair).

Mike: You got the beeps, there you go.

Ryan: I got the beep on the wheelchair I use when we need a stern voice.

Mike: Smart, they know to listen to that like, oh I better pay attention.

Ryan: That's the equivalent of using their full name.

Mike: Perfect, perfect. No kid wants to hear the full name.

Ryan: Yep.

Mike: So, since your diagnosis Ryan you've become very involved with the cause and the fight against ALS and you have a record-breaking walk to defeat ALS team that is filled with your friends and family, you were featured and spoke at a gala event last fall, and you recently joined the board of the local chapter of the ALS Association. Everyone's path is a little bit different and for various understandable reasons some folks choose not to be involved at any level, what made you decide to basically go all-in on raising awareness and funding for ALS?

Ryan: I think it just got to the point where we wanted to find a way we could do something you know this disease tends to take over all aspects of your life and there's a lot to be done to fight back; whether that's awareness, whether that's advocating legislators, whether that's raising money for treatments or to find a cure, or maybe even cures, plural, we just felt like we had to do something.

Mike: And, I've had the good fortune of meeting a lot of your friends and family who have seemed very supportive of you in this fight; did it take much arm-twisting and cajoling to say to them "hey, this is where we're at now and and we need you behind us"?

Ryan: No, it didn't take any arm-twisting.The outpouring of support has been incredible. Family, friends, co-workers,neighbors, across the board has really been I think heartwarming to see how easily people are willing to jump in and help out.

Mike: Right, and more recently, over the last year, you have joined the advocacy front and you went to DC last year, you and Martha, to meet with legislators in their offices and I think you're planning to go back again this year is that right?

Ryan: We are, yes.

Mike: Why do you believe it's so important for you personally to be heard in that arena as well.

Ryan: Yeah, well I think there's a lot of ways, like I said, to go at ALS. One of the big ones is getting government help not only for research funding, you know I've heard that, I've heard people say ALS is not incurable it just needs more funding. And so, if we can get government funding that can make a huge difference on top of what people are already doing privately, but I also think on top of that there's other issues out there that are important to educate and make sure legislators know we're heard.

Mike: Of course. What was that experience like for you and Martha going into those offices in DC? I mean it's one thing I think to go to the local office somewhere in the Twin Cities and sit down with an aide or a legislator and say this is my story and here's why we need your support. Entirely different to go to fly out to Washington DC and kind of be in that environment and going through those halls and going into those offices, it can be kind of intimidating. What was it like for you to open up and share a story like that in that place?

Ryan: Well, for us a lot of it was educational; learning about the process of getting out to DC, meeting with legislators, learning about Co-Sponsorships and Dear Colleague letters and all the weird stuff that goes on in DC. We didn't have any of that political background, so being our first year we had a lot to learn, but then I think it's motivating to get out there and actually get face time in hopes that you can move the agenda forward.

Mike: Right and ALS truly a bipartisan issue. If you are a human being, it doesn't matter which side of the aisle you're on,

Ryan: Absolutely.

Mike: you really should be helping to end this disease in any way possible so I suppose when you're going into those meetings you have that on your side to say 

Ryan: Absolutely

Mike: you're Republican you're a Democrat, doesn't matter to me, here's why we need your help.

Ryan: And we're and we don't we don't take either side in this, politically speaking, we push forward no matter who our representative is, who our senators are, saying here's what's important, we want you to hear us, here's what we need, we'd like your help. And it has been encouraging to see the bi-partisan support a lot of our legislative issues do have.

Mike: Sure. Looking at the lead initiatives for ALS advocacy at the moment, at least what the ALS Association is helping to guide, we've got waiving the five month waiting period for Social Security Disability Income, or SSDI as it's often referred to, increasing or at least maintaining federal research funding from the Department of Defense, NIH, for the National ALS Registry, and then reducing barriers to home health care for those living with ALS; considering those priorities, all of which are obviously important, is there one that stands out to you and your family that you are particularly passionate about?

Ryan: I would say two. The first being eliminating the SSDI waiting period. As a family with kids, figuring out when you can no longer work and needing those Social Security and Medicare benefits, a five month waiting period before you can get the benefits is a long time for families to wait and I think especially with ALS the prognosis could be so short that five months waiting can make a big difference. The other thing I'd like to emphasize,that I mentioned earlier, is the importance of research funding, to get treatments, to find cures, we need more research funding and so I'd really like to emphasize our Congress do more to help that effort.

Mike: Yeah, that is always going to be a topic for diseases like ALS. No matter how much funding is currently available, we need more to advance treatments and to make things happen more quickly.

Ryan: Yeah, it's not cheap to research and find ways to treat this disease.

Mike: And as we saw with the Ice Bucket Challenge five years ago, that influx of dollars and that, you know, splash of funding can really go a long way quickly.

Ryan: Yes.

Mike: We need things like that

Ryan: Exactly.

Mike: and knowing that the Department of Defense and NIH had those funds available we just need to access them that's where we're at.

Ryan: I agree.

Mike: Outside of those kind of core issues, is there anything on the fringe or something for you personally that you think, "this really should be added to the agenda" or at least should be discussed more and we should consider bringing something to our legislators.

Ryan: Yeah, one of the things, and I'm not as educated on this topic, but right now we need better and more modern guidance from the FDA on clinical trials. Our current FDA guidance is out-of-date and archaic and there's an effort out there to modernize that and I think clinical trials are the avenue to finding treatments and a cure so we need to improve that process to improve our odds. 

Mike (narration): We hope you appreciated hearing Ryan's perspective on ALS advocacy and we want to thank the Tofteland's once more for giving us their time and allowing us to record in their home. Next up is an interview we recorded on the campus at the University of Minnesota with well-known neurologist and researcher Dr. David Walk and Dr. Walk provides some really interesting insight and education on the state of ALS research in 2019.

Mike (at U of M): We are joined today by Dr. David Walk who is a professor and head of the Neuromuscular Disease Division of the Department of Neurology at the University of Minnesota. He is also the Director of the ALS clinic at the U, which is an amazing clinic and we are so appreciative of your time doctor. Welcome and how are things in your world?

Dr. Walk: Great, thank you.

Mike: We obviously want to talk to you today about ALS research because you are someone that is deeply involved in that field and, in addition to your work with individuals and families in the ALS clinic, we want to talk about your own research in a little bit here, but first I want to more broadly address the state of ALS research. So, this summer we're marking the fifth anniversary of the original ALS Ice Bucket Challenge, which was obviously the most transformative event in the disease's history. The 220 million dollars raised globally provided funding for a wave of new projects and initiatives - in your opinion, which area of ALS research do you think has made the most significant progress as a result of all those dollars that came in from ice bucket?

Dr. Walk: Well, first I want to emphasize that in addition to the funding for research I think ice bucket was important because it raises awareness, raised awareness of ALS among the general population substantially and also you know it raises awareness of ALS amongst those who are starting a career in research. People are finishing their training, have lots of opportunities to use the tools they've acquired, and if they know that there's a lot of excitement, interest, enthusiasm, progress,and funding in ALS research, that gives them more reason to work in an ALS research lab, to grow into their own lab, and to really contribute to the field. So, I think that that awareness is important not only in the general community, but also amongst scientists. 

There are a few things I think that are critically important in terms of where things are going with fundamental biology in ALS research because if you don't understand a problem it's a lot harder to solve it.There's a greater understanding of the relevance of aggregates of proteins and cells the basically clumps of molecules that are not in the right orientation that are not able to do what they're supposed to be doing and that are clumping other proteins in the process. That's probably a really really important part of the problem. We know more about that than we have in the past.There may be a problem with them getting back and forth between two different compartments in the cell so I think that basic biology is critical and I think more has been learned about that. 

A lot of attention has also been focused on genetics, as you're likely aware, even though most people with ALS do not have an obvious genetic basis. Our understanding of the genes that can lead to ALS tells us a lot about how the disease can develop and there are probably a lot of other genes there that are relevant to severity or other aspects of ALS so I think those are among the things that have become high profile in the past five years.

Mike: You mentioned the genetic side and I want to ask you about a term that I think a lot of people hear and may not necessarily be aware of what it means and kind of how it impacts research and that is the word biomarkers. Can you just explain what a biomarker is and how that plays into research?

Dr. Walk: Sure. So, biomarker is basically a test, if you will, that tells you something important about a person's condition. There are lots of kinds of biomarkers. For example, the diagnostic biomarker helps us understand whether a person has a condition or not, a progression biomarker tells us how is this moving forward or how's a person's condition changing, a prognostic biomarker will tell us on the day that we do the tests what the likelihood is that somebody's condition will get worse quickly or stay stable or be relatively mild. A prognostic or I'm sorry a predictive biomarker will tell us whether a particular treatment is or is not likely to be helpful. These are extremely valuable and I'll give you a few examples 

Mike: Please.

Dr. Walk: outside of ALS. For example, in multiple sclerosis MRI scans have proven very very valuable in telling us how active a person's MS is. There are parts of the brain where they may not develop symptoms, but the MRI will show us that a person's condition is very active or not.

Mike: Okay.

Dr. Walk: That's been really important in developing treatments for MS because if the MRI gets better, the treatment is probably working. In cancer, as you're probably aware, there are certain cell surface markers that you can test on a biopsy to determine whether a person's cancer will respond to a particular treatment or not. Some of these treatments are extremely effective for somebody who has that marker and ineffective for somebody who doesn't. So, that's a sort of predictive biomarker.

We don't have things like this in ALS and there's been a lot of progress in developing them, but those sorts of biomarkers can be extremely valuable in helping us treat people living with ALS.

Mike: And it's reasonable to assume I suppose that if you're able to identify more of those biomarkers those can provide targets for potential therapies and treatments that are either in the pipeline or being developed down the road?

Dr. Walk: Absolutely.

Mike: That's promising to hear something like that. Just getting back to the Ice Bucket Challenge briefly, for many folks who are learning about this type of research for the first time and aren't necessarily aware of the complexities of how neurological research go; they're wondering - we raised all this money, how come we haven't uncovered more treatments or a cure? You got that 220 million dollars,really, what does it take and how would you explain to them and sort of the nuance of this type of disease research?

Dr. Walk: Well, I'm not sure that anybody knows when, where, or how, you know, the great breakthrough is going to come in any condition like this, but again I would simply reemphasize that much of the difficulty with ALS is we don't understand enough of what's actually happening and why it's happening in the cells and how to fix it and so a lot of clinical research that we do, trying out new treatments for example, is based upon some pretty good hunches, but that's what they are. They're not targeted to a guaranteed cause of disease and so I think a lot of what is playing out is a better understanding of what actually causes ALS and I think that's gonna be really really really important.

Mike: And I've heard from some of your colleagues that they believe when we do have significant treatments that are going to slow ALS down, there's not gonna be one that works for a vast majority of people it's probably going to be several or some kind of cocktail that depending on your form of ALS, and your progression, will hopefully slow the disease down for you, is that right?

Dr. Walk: I don't think we know. That's one thought and again, in cancer, in multiple sclerosis, you know, that applies. I still hold out hope that there would be some magic detergent that would undo the aggregates and if these aggregates actually are causing the disease that would be a major breakthrough regardless of what triggers your disease. 

That said, for example, people with genetic forms might have treatments that are targeted to that particular gene, whereas people with non-genetic forms not so much. So, I think time will tell we just need better treatments, better answers, and I don't care if it's a cocktail or one magic bullet as long as it happens fast.

Mike: Magic detergent, I like that. I'm going to use that going forward. I want to ask you about your own clinical research in a moment doctor, but first just a bit on clinical trials.There has been a fair amount of frustration in the ALS community recently about access to clinical trials and it seems like much of it's related to restrictions based on either disease progression or date of diagnosis, things like that. How can we address that?

Dr. Walk: So that's a fundamental dilemma in ALS clinical trials and development of ALS treatments because on the one hand if a potential treatment has a moderate benefit you've got a much better chance of seeing that benefit if you enroll what we would call a homogeneous population: a group of people who have, and I think this is kind of the emerging paradigm, who are relatively early in their disease course, clearly getting worse, and similar in certain respects to each other, if you will. Historically, when we've enrolled a wide variety of individuals living with ALS in clinical trials, we've learned that a meaningful proportion don't get any worse over the course of the trial, just normally. In other words, there are some people who have thankfully slowly progressive ALS. Well, if you're trying to show that something has a say thirty to fifty percent benefit, which is not a cure, but is still something important, and 25 percent of the people in the study weren't gonna get any worse at all, thankfully, it's gonna be really hard to prove that benefit. 

So, these are reasons why the clinical trials seem to be getting more and more restrictive. The converse of that dilemma, the other the other horn of that dilemma of course, is number one people who are graciously enthusiastic about participating in studies are not able to participate in those and you could still make the argument that if you prove that something works in a very limited proportion of people living with ALS, how do you know that you can generalize that to everybody? That's another kind of logistical problem, but we all love to have that problem of having ten or twenty treatments that seem to work in ten or twenty percent of people with ALS, then we can try to generalize that and find out with time.

Mike: Sure, that makes sense. Along those lines, folks that have experienced placebo portions of studies and you hear about historical control versus placebo, you understand the science behind it obviously, is there a way that we can get move away from more of those placebo studies or is that just the nature of the research?

Dr. Walk: So, there are a few ways to address that. First of all, I want to state very clearly that participation in clinical trials is a courageous act to help everybody living with ALS and is no guarantee of benefit and there have been trials in the past in which the people who got the proposed treatment did worse than people who were receiving placebo. So, it's really important that people understand that they are contributing their time and they're courageously contributing themselves to this effort. It is no guarantee of individual benefit. But, to your point, I also recognize the participation in clinical trials for a very good reason provides hope and there are ways of working around the placebo issue. 

So, for example, one way is what's called open label extensions. So, several clinical trials will say we are very grateful for your participation, after this six-month study is over until we either know that it works and is approved by the FDA and is available to everybody or know that it doesn't work, if you would like to go on the active drug or treatment we will provide it to you free of charge. So, an open label extension is a little bit of a kind of encouragement that regardless of whether you're in the placebo group or not, we will offer it to you if it turns out it might ultimately prove beneficial. 

Another approach is to change the randomization, so instead of having half of the people receiving placebo and have receiving treatment, you can often statistically still do good quality science and offer the treatment to two-thirds of people and the placebo to one-third. So, by changing the randomization, people feel as though they have a better opportunity statistically. 

Another way of doing that is to have, what's being developed is called a platform trial, where you can share the placebo group amongst several studies so you might be evaluating three or four or five different treatments in the same platform and so if there are five different treatments you may only need one out of five people to be on placebo and that group is used as the placebo group for each of the five studies. There are some limitations to that, but you know the point is that that allows us to provide some potentially effective treatment to a larger proportion of people. 

Finally for, and I think this is important to emphasize, for people who do not qualify for clinical trials and are interested in certain compounds or treatments, and I I put it that way because not every treatment is a drug, there are emerging opportunities, which are still not wide open, but these include of course expanded access programs and some of the changes that have come through right to try. Not guarantees of access, but more than was previously the case. 

There is also conversation about, if resources permitted, enrolling people who might not qualify for the clinical trial, as a separate group for two purposes. So, say for example you have a clinical trial of drug X and you have a hundred people who qualify for the study and three hundred people who don't, but all four hundred want to try drug X. If, again, the resources are there you could say to those other three hundred: we'll give you a drug X, we guarantee it's drug X, or maybe we'll do a placebo controlled study for you as well. You won't qualify and your outcomes won't be part of the major research study that will be sent to the FDA however, this allows us more opportunity to learn just in general about the safety of the drug. It allows us more opportunity to learn in general about the generalizability of its potential benefit. In other words, will it help people who wouldn't have been candidates for the study, and will give you an opportunity to participate on some level. So, that's another way that under some circumstances might expand access to therapeutic trials.

Mike: Thank you for that breakdown, that's really helpful to have those multiple perspectives on really what's being done to kind of address the the frustration that people are experiencing. In talking about the number of ways that these studies are evolving and trying to maybe branch out a little bit from the traditional methods of placebo and historical control, those sort of things,do you find that clinicians and researchers are more open to trying new things and exploring different avenues given what we're trying to do in ALS research?

Dr. Walk: A couple of ways of answering that. I think there's a greater recognition of the interest in being able to participate, which is tremendous even if somebody doesn't fulfill certain criteria. So, to the extent that there are a lot of conversations about finding ways to take advantage of that interest, yes. 

The other thing that's happened, I think, in recent years is that there's been an increasing recognition of the opportunity to utilize our connectedness. So, for example, Rick Bedlack, who spoke here last year, is a very creative guy and has taken advantage of things like PatientsLikeMe or other connectedness that is bubbling up from people living with ALS and saying hey I'd like to evaluate this particular intervention, the science might be more challenging to do it this way, but let's just do a study, send us your data, find a way to try to at least learn something from what people are doing on their own anyway. If people are going to be doing it on their own, we should take advantage of the opportunity to learn more for the entire community.

Another approach, which was done by Michael Benatar, who's a brilliant neurologist at University Miami, was in studying a treatment for a rapidly progressive form of ALS, recognizing that it would be very difficult for people to travel to Miami or to Atlanta or other sites, tried to again to kind of gather data locally after enrolling people in the study. 

So, there are ways to try to expand access to clinical research that weren't available in the past, particularly when we have so many people who either have a great deal of difficulty with mobility and travel or who live in rural communities far from any sort of ALS center.

Mike: Right, and the power of the internet and being able to crowdsource some of that data as well as communicate more quickly and easily I'm sure is making a difference in how research is conducted.

Dr. Walk: Right and it also allows us to study and try to treat rarer forms of ALS. So, again, using the example of Dr. Benatar's study, if you're looking for you know a particular type of a particular genetic form of ALS and there might only be a very small number throughout the country, you have to reach out to people and have a way, have to have a way of communicating with them.

Mike: Sure, sure, that makes sense. For those that are looking for new trials and maybe not having any luck or aren't aware of the best avenues to search what what advice would you give them?

Dr. Walk: Right, so all clinical trials in the US are required to be listed on clinicaltrials.gov so it's clinicaltrials, one word, dot gov. And, in there you can put in filters so you could say Minnesota or a 500 mile radius of your zip code and put in ALS, you can put in actively recruiting or not recruiting, you can put in observational studies or basically studies to learn more about ALS or you could only put in treatment studies. Okay? So, you can use clinicaltrials.gov to get a very accurate, very comprehensive view of what's available.

I also like to let people know that there are some more consumer-friendly ways to access that information because clinicaltrials.gov is very comprehensive, has a certain amount of medicalees, they don't make much of an effort to...

Mike: It can be kind of overwhelming I'm sure.

Dr. Walk: Yeah, exactly, so you know ALS Association also has on their website information about clinical trials that are available. Another one that I like very much is ALS.net which is ALS TDI's website, if you drill down to trials to research in ALS.net, again they have the active trials listed in a way that's a little easier to understand. I'm sure MDA does as well. 

So, there are other resources, but very easy to find out what's available by going online.

Mike: That's great to know, thanks for that. I want you to tell us doctor a little bit about the research that you're leading and we're fortunate to be in a region with some pretty amazing facilities, one of them being the University of Minnesota and we've got the Mayo Clinic in Minnesota. Talk about what you've got going on and kind of what you're seeing from that.

Dr. Walk: Right. First of all, we have tremendous resources in terms of clinical care in the Dakotas and in Minnesota. Within the Twin Cities we've established what we call the Twin Cities ALS research consortium because there are research projects going on at Hennepin County Medical Center, at the University, at Health Partners, and we're all colleagues at the University in terms of faculty assignment, but we want to be sure we're working collaboratively with people interested in research. 

So, the consortium basically presents all of the active trials at all three sites to all of the people that we see in our clinics and will refer them to whichever site is running a trial that they're interested in and that they qualify for. So, currently we have about five interventional and three or four observational studies that are still open at these sites. Some of them are finishing up, some of them are starting up, but we make every effort to work very collaboratively and of course we notify people of the studies that have been done at Mayo as well. 

At the University we have got a few things that are centered at our site. One is a three site study to investigate a way of slowing down the disease with a supplement. Another is funded by the ALS Association, which we're proud of and very pleased to have received, and that is a study of a technique to help with breathing and we hope speech and swallowing in ALS. A rather straightforward, simple technique and we're well into our second year of that two year project. So, a lots happening and we're very very grateful to people who are willing and able to participate.

Mike (narration): Thanks again to Dr. Walk for the time and the informative discussion. I know I learned quite a bit, I hope you did as well.

We're gonna keep things moving and jump right into a conversation led by one of the youngest ALS advocates you'll ever meet.Nine-year-old Serena Robb has lost both her grandmother and aunt to ALS and naturally has been curious about different aspects of the disease so she sat down with Anne Supplee, a Care Services Coordinator at the ALS Association, to ask a few questions.

Anne: Well, hi Serena, thanks for coming in today.

Serena: Uh, hi! (laughs) Today, I'm gonna ask you some questions about ALS.

Anne: Okay, what did you want to ask me?

Serena: If my family member can't speak or swallow, how will they eat?

Anne: That is a very good question. So, one of the first things that people do when they start having trouble swallowing is they puree the food, so they mash it up in a blender and make it more like a milkshake consistency, so they can they can swallow it more easily. 

The other thing is there is something called Thick-It and it's like a powder that you put in liquids to make them a little thicker. It's easier to swallow thick things than super thin, like water is one of the hardest things to swallow. 

And then, if they still are having trouble swallowing they can get a feeding tube and that's a tube that goes right into your tummy and they pour liquid nourishment down the tube. So, like cans of protein and vitamins and that kind of thing.

Serena: Do people with ALS sleep in their wheelchairs? Do you have to get them out of their chair to go to bed?

Anne: Well, some people do sleep in their wheelchairs and that is not very comfortable. So, some people just find it easier to sleep in their wheelchair because the wheelchairs are made for them and they can lean back and put their feet up, but it's really you get a better night's sleep if they get out of the wheelchair and into bed.

Serena: Adults talk a lot about grief, do I need to worry about what's going to happen?

Anne: Grief is a very complicated thing. Did you see the movie Inside Out?

Serena: Yeah.

Anne: Yeah? With all those emotions? So, that's kind of what I think about with grief like it's a little bit of sadness and a little bit of anxiousness and nervousness and kind of all rolled up in one. 

What, what would you be worried about happening? I guess I'm, I would just kind of want to clarify the second part of the question. Was there anything specific?

Serena: Like, what's it gonna look like or feel like when it happens?

Anne: When somebody has ALS?

Serena: Yeah or when they die?

Anne: Oh, when they die. Yeah. So,actually that's a really good point that, there's grief sort of all along the ALS journey because people get, are, people really feel the loss of not being able to walk. They grieve not being able to walk or maybe not being able to eat. 

One of the things that people talk about is not being able to hug people and that that's really hard.

Serena: Oh.

Anne: Yeah.

Serena: That's sad.

Anne: It is and it's really hard for people not to be able to do that. And then when the person dies, there's a whole different kind of grief and sometimes, usually it's a lot of tears,most of us cry when we're sad. Some of us get angry. 

The other thing that happens is people get really forgetful. Like, they just don't remember things or feel really spacey and forget to do homework or forget a meeting that they have at work and that's also really typical of grief where you just kind of kind of feel like you're losing your mind a little bit. So, grief is really complicated and it can last forever, really. I mean my dad died, not of ALS, but my dad died nine years ago and I still think about him and I still miss him sometimes.

Serena: Yeah, same thing with my grandma and my aunt.

Anne: Yeah, and you you probably have more memories of your aunt than your grandma. Cause you were pretty little when your grandma died, right?

Serena: Yeah.

Anne: But, you can also miss somebody that you didn't know very well. Like, you can just miss not having a grandma.

Serena: Yeah.

Anne: Does that happen sometimes too?

Serena: A little bit.

When I get sick, I take medicine to get better. Can't people with ALS just take medicine to get better?

Anne: Unfortunately, they can't. We don't yet have a way to make ALS go away or fix it or make it better. There are a couple medications that people take to slow down the ALS a little bit, but we really don't know what to do yet to make ALS go away.

Serena: When I have questions, who do I go to to ask?

Anne: Yeah, that's a great question.I would encourage you to talk to your parents first or maybe another family member that you trust.

Serena: Okay.

Anne: There are also teachers or coaches, maybe your Girl Scout leader, any anyone that you think you feel comfortable talking with and who might be helpful to you. And then the ALS Association is always here, you're always welcome to call and say "I have a question" and we'll do our best to answer it.

Mike (narration): Well, Serena is obviously a very bright and thoughtful young person and it's clear that she's going to do her part to make this world a better place and to advance the fight against ALS. We cannot thank her enough for coming onto the podcast to chat so thank you again Serena. 

For the last segment of this episode, my colleague Kristin Wallock and I met with Beau Bedore, a speech-language pathologist and assistive technology expert at the VA here in the Twin Cities. I think that's putting that lightly; when you hear from Beau you'll hear what a wizard he is about this kind of stuff. Kristin heads up our chapter's communication and assistive device program and she and Beau go back and forth discussing some of the details about how far smart home technology has come in the last few years and what that means for those living with ALS. 

And just as a side note, before you listen to the segment, I want to point out that the VA and the ALS Association do offer different services in their respective programs so if you're someone who may be interested in learning more about smart home resources I encourage you to check in with your local chapter of the ALS Association or the VA in your area.

Mike (at VA): We're on campus at the Spinal Cord Injury and Disorders Center at the Minneapolis VA Health Care Headquarters today. Did I get that correct?

Beau: Close enough, Mike.

Mike: Okay. and I am joined by Beau Bedore of the VA and Kristin Wallock, my colleague at the ALS Association. Hello to the two of you and welcome to the podcast.

Kristin: Good morning.

Beau: Good morning. Welcome to the Minneapolis VA Healthcare System.

Mike: Thank you. We are we're happy to be here. We've got some really interesting things to dig into today, but to start with could each of you tell us a little bit about your respective roles to give our audience some context.

Beau: So, my name is Beau Bedore and my clinical background is that of a speech-language pathologist. I started as a medical trainee here at the Minneapolis VA when I was a graduate student at the University of Minnesota. I was here when the Spinal Cord injury and Disorder Center opened in 2007. And just in the last two years I am now acting as the Program Director of the Spinal Cord Injury and Disorder Center - Assistive Technology Program. 

So, our whole mission, which ties in really well with that at the ALS Association, is to help individuals with spinal cord injuries and disorders have access to technology solutions to promote health, well-being,and functional independence.

Mike: Sure. Thank you for that. Kristin, how about you?

Kristin: I'm Kristin Wallock. I'm a Care Services Coordinator here at the ALS Association. I'm clinically trained as an Occupational Therapist and I've been working in that capacity for over 17 years. I'm currently managing the Hrbek-Sing Communication & Assistive Technology here at the ALS Association. So...

Mike: You're our tech expert, that's how I talk about you. Tech wizard is the term I think I use and that's how I'd probably describe both of you. We're talking about technology today and you're both obviously entrenched in that world and many of the assistive devices that you work with every day are really considered cutting-edge and in a very rapidly changing and evolving marketplace. 

Were either of you tech enthusiasts before you got into this work? Did you realize that you'd be kind of this deep into technology?

Kristin: No.

Mike: Short answer is no from Kristin.

Beau: I agree with Kristin. I think when I entered the field I had no idea that on a day-to-day basis I'd be working primarily with state-of-the-art technology like this.

Mike: Sure, but as you've gained the experience and grown into your roles, do you feel like now, even in your everyday life, you're embracing tech on a higher level?

Kristin: Absolutely, absolutely. I always say that it's a part-time job staying on top of all the emerging technology and it's critical to those that we serve to make sure that we do stay on top of that.

Beau: I couldn't agree more. I think that all of us use technology in our daily lives and if you can imagine what it would be like not to have access to that technology, that would be a huge limitation. And, so, much out of necessity in the patients that we work with, we have to stay on top of this ever-changing field.

Mike: That makes a lot of sense given how quickly these products become obsolete and how quickly the whole field is advancing. When you consider how ALS impacts the body, robbing you of muscular function and, in many cases, your ability to verbally communicate -clinicians, like the two of you, have been searching for answers in the form of technology. Things like speech generating devices, Eyegaze systems, environmental controls; one area that has really taken off over the last three years is smart home tech and more recently it's become a very solid option for people living with ALS. 

Kristin, the Minnesota, North Dakota, South Dakota Chapter of the ALS Association now has a smart home program. Can you talk a little bit about how that program came about?

Kristin: Yes. So, a couple of years ago we decided to roll out our smart home program, as a pilot, as we knew the potential that it had to impact those living with ALS. And I would say that this program has been widely successful much due to the support that we've had from our donors and from our agreement with Best Buy who have a big part in setting up training and providing ongoing tech support for those living with ALS.

Mike: With Best Buy, was that something where Best Buy came to the Association and said we have this idea or was it more you were exploring the idea of smart home and thought is there a good local partner or a good national partner that we could work with on this?

Kristin: Yes. We sought out Best Buy and they were very desirable because they were able to serve individuals living with ALS in Minnesota, North Dakota, and South Dakota.

Mike: Okay, Beau, I want to ask you a similar question in a moment, but first Kristin can you tell us what kind of products are offered through the smart home program at the Association?

Kristin: Absolutely. Currently we are providing the Amazon Echo, the Amazon Echo Dot, the TP-Link plugs, the Harmony Hub, the Echo Connect, and also the Canary.

Mike: The Canary and that's a camera right? A smart camera that

Kristin: In-home security, correct.

Mike: Beau, here at the VA, when was it that smart home gadgetry really entered your purview.

Beau: So, when we built this Assistive Technology Lab back in 2007, many of the smart home technology solutions were actually dedicated devices and many of them functioned as both speech generating devices with infrared controls that could be used for home control of say a television. In the last three to four years there's been a dramatic increase in smart home technology becoming more commercially available so, even if we think about the technology that we have in our homes, it's designed in a universal fashion where everybody's using it. 

So, what we've done from a clinical standpoint is we've really sought out ways that we can use these commercially available solutions to improve the functional independence, safety, and quality of life of individuals living with ALS. And, so, just like Kristin said, at last count there were probably six Amazon Echo devices that are available and they're adding more new product lines all the time and we provide a variety of those options through our Center in addition to the Google Home products that are available.

Mike: Wow. And it's, I'm sure it's a lot. We've already mentioned a few times, there's so much to keep up with and these products are being added and changed and iterated on at all times. 

For the two of you, what are you hearing about the biggest benefits of smart home equipment for both people living with ALS as well as their caregivers?

Beau: So, when I think about the functions that are most useful or, in terms of the feedback that we get, that have the greatest impact on their lives; I think it comes down to being able to control lighting and their environment, things like the television, but another huge feature that I see is imperative for individuals with ALS are the communication features. 

So, what I really like about the Amazon Echo smart speakers is that they have incredibly powerful communication features like drop-in, voice calling, as well as the ability to create an interconnected intercom system within one's home. And so, I have family members of individuals with ALS where they'll go out shopping to the grocery market and from their phone they can remotely drop in either by audio or through a video conference link and have a connection with their loved one at home, all hands-free, all done in a matter of seconds on their devices.

Mike: That must provide a lot of peace of mind for folks leaving the home and, knowing that their loved one's gonna be there, that they can check in with them via both audio and video at any time.

Beau: You can't imagine, that's the consistent feedback that we hear from caregivers and spouses is the peace of mind that it affords them because they want to be there for their loved one and oftentimes they feel like they can't leave and so having that option to be able to run a quick errand and know that they can check in at the drop of a hat

Mike: Right, that means a lot.

Beau: is invaluable.

Mike: That means a lot. Kristin what are you hearing at the Association?

Kristin: So, just to kind of add on to what Beau said, I think that that's been incredibly helpful for our individuals living with ALS as well because with the Respite Program, for example, families are often afraid to leave their loved one at home, but with that technology they feel safe to do so.

Mike: And, are they doing that mostly using the smart hubs that had the cameras built-in or is it a combination of the Canary, like you mentioned? Is it both, and?

Kristin: Both.

Mike: Okay, okay. And all of these devices or most of these devices have apps that run that interface with smartphones, is that correct?

Beau: So, I think what we see most common in the field is we're using the Amazon Echo Show or the Amazon Echo Spot, both of which are smart speakers that have a camera and video conferencing capability. The Echo Show has a 10-inch screen, which is really great, and then the smaller Echo Spots have a two and a half inch screen, but both allow you to see the person on the other end of the call and I think that's a really important distinction for people to understand between the Amazon Echo speakers and the Google Home speakers. 

The Google Home Hub, which is a video display, does not allow you to see the caller on the other end because there's no built-in camera. So, that's a really important distinguishing feature in my mind when we consider the two different product lines.

Mike: Right and I want I do want to ask you about the differences in just a moment here, before we get that far down the line. I think when people hear Smart Home, Alexa immediately pops into mind.

Beau: Certainly.

Mike: And those Echo devices that you mentioned, the Google Home devices, these things seem to be everywhere and how much have those in particular, which in many ways act as the kind of brain or hub of a smart home system, how have they changed the landscape because that seemed like a really big jump.

Beau: Yes, so what you're really talking about is the virtual assistant software. Amazon brands their virtual assistant as Alexa and Google brands their virtual assistant as Google Assistant. And, so, Alexa is a female only voice whereas Google Assistant you can have a male or female voice. 

I think in terms of the accuracy or the intelligence of the virtual assistant, they're very comparable. If you read some of the tech blogs people will say that Google Assistant's search query features, so for instance if I want to know where a nearby movie is playing or if I want to ask it a specific question, it's using Google Analytics in their search engine to pull that data and so a lot of tech columnist would give Google the upper hand in that arena. 

However, the Amazon system and Alexa uses what's called Far-Field Voice Recognition and so once you learn the command structure, the accuracy is incredible and people catch on to it very quickly. So I think, at the end of the day, they're they're very comparable, but I would give the virtual assistant of Amazon the upper hand in that there are many more functions and abilities and that's where we'll get into talking about the skills and what you can do when you integrate these smart speakers with some of the other technologies and products that are available.

Mike: Sure and I don't I don't want to ask you personally which is your favorite, I suppose that's a little bit like asking you to pick your favorite child. You've got Alexa and Google Home and Smart Things and Apple HomeKit in Siri. Kristin, would you say Alexa is probably more widely used at the Association as well?

Kristin: Absolutely.

Mike: Okay. Do families that you work with in most cases are they asking you which should I choose or are they saying I want Alexa or I want Google Home or what are you hearing?

Kristin: I would say it's rare that we receive are quest for the Google Home. People are generally more interested in the Echo.

Mike: Yeah. It seems to be more popular just anecdotally.

Beau: And certainly, if you are an Android user and you're a Google loyalist, you might have a particular interest in that product line, but what I think is really unique about whether it's the Google Home products or the Amazon Echo speakers; either system can run on any other smart devices whether it's iOS or Android, they have apps available on both app stores, and so where I tend to focus the conversation is really on the features and functions that they want. And strictly speaking if we had to compare the Amazon features to the Google Home features at this point Amazon is gonna win everyday.

Mike: Okay, okay. That's good to know. Outside of the hubs and those voice assistance which we just discussed, which type of product seems to be the most popular, most useful for families living with ALS? Is it the lighting or the Harmony Hub to control entertainment devices, the smart doorbell security cams? What are people asking for?

Kristin: I would say the lighting or the Harmony Hub.

Beau: I couldn't agree more. I think Kristin nailed it.The other product that's become very popular are the Amazon Smart Plugs and the benefit of going with a Smart Plug is if people don't want to buy the Philips Hue light bulbs, which are compatible with the various systems, they can just plug their current lamp into that Smart Plug and now they have a voice-activated light.

Mike: Oh, that's nice.

Beau: The other products Mike that are really popular would be some of the; so in addition to the Harmony Hub, which allows you to control your TV via voice, Amazon has two options that are available, the Fire TV Stick and the Fire TV Cube, and then the Google equivalent is the Google Chromecast. And then you mentioned the Canary Kristin, the two other systems that we see commonly used or requested are the Ring Video Doorbell and the Nest Hello Video Doorbell in addition to the Nest Thermostat, but again that's where we talk about a more comprehensive smart home package.

Mike: And the learning curve on this stuff because it can be a little bit intimidating to look at all these devices and say wow how am I going to set this up, how am I going to make this work, and I know we've got Best Buy and other experts helping with that, but is it something that's fairly intuitive where folks can, as they start to explore and experiment themselves, they can figure it out fairly quickly?

Beau: So, this is one area where I think that the Alexa system, at least, initially is going to require more specificity in how you give the commands. There's a particular structure that you have to adhere to, where as the Google Home virtual assistant is more intuitive and so you don't have to follow a strict structure in how you give the commands, but either system with repetition and practice I think is learnable for anyone.

Mike: Right.

Beau: Even my five-year-old wakes up in the morning and he says Alexa light on.

Mike: I know, I know. It's amazing to see young people and children embracing this stuff and just having total comfort speaking to a virtual assistant about something they want them to do.

Beau: You're absolutely right and we hear that from our from our patients. There are so many people that will come in and say "yeah, my grandson or granddaughter was over the other day and taught me how to add a shopping item to my list".

Mike: Wow, wow. That's incredible.

Kristin: Which is so great too because this smart home technology has benefits beyond just a single end-user.

Beau: Right.Mike: Yeah, yeah. One of the benefits we haven't really touched on yet is quality of life and for someone living with ALS, where their muscular function is being lost and their quality of life is inherently dropping as days and months go, being able to improve things on this scale for them is important. 

In terms of quality of life, what do you think smart home tech is doing for folks?

Beau: I think it's revolutionizing quality of life. We hear from veterans and patients with ALS all the time that talk about what a dramatic increase it's had in their quality of life because they're able to...it can be a simple Mike as not having to ask your spouse or caregiver to turn on the television or to turn on a light and you just can't imagine how much independence it gives that person when they're so reliant on everything else for someone else to do for them.

Mike: Yeah, Kristin I imagine you hear that a lot. I bet some of the families are saying to you this has been really helpful, is that what you hear?

Kristin: Absolutely, yes, just because with ALS there is so much loss and so by continuing to support one's independence in this capacity we can really support their emotional well-being and their quality of life.

Beau: I think the other thing that we should add to that Mike is just the sense of social isolation that is a risk for individuals with ALS and one of the things that we see in terms of quality of life with these smart speakers is the connectivity that it provides. So, people can connect through video conferencing, they can connect through calling and text messaging; and if you lose the ability to use your hands and you can no longer use that tablet or that smartphone, having these voice-activated speakers that are hands-free now restores that connectivity, improves social connectivity, and quality of life.

Mike: That's huge being able to give that back that means that means a lot. Thanks for elaborating on that. Beau, one question I think many of us have, I know I've been curious on this front as well, relates to privacy. You're putting all these devices with microphones and cameras actively listening and in some cases watching you, in your home. Are we being recorded? Should we be concerned about the back end of this stuff?

Beau: I think certainly with some of the recent press that's come out, it's a valid concern now more than ever. The bottom line, what I tell people, is if you're using any type of smart technology, whether it's your phone or tablet or a smart speaker, there are inherent privacy risks. And so, I think the only alternative to satisfy everybody's privacy concerns, I think, is to not use the technology or to turn off their devices. And that's certainly an option. 

Just the other day somebody was into clinic and they said "well, you know, we're gonna be having a party and some friends will be coming over," they have an Alexa system in their home, and they said "you know, what can we do about that? Should we be worried if our guests fear that they'll be being recorded?" And so, during that party they can unplug their devices and that eliminates the risk. 

The other thing that I'll mention is that these devices are programmed to listen for specific wake words. And so, with the Alexa ecosystem there are four weak words that you can give it.

Mike: Okay.

Beau: You can say "Alexa", "Amazon", "Echo" or "Computer" and those words are going to wake up the speech recognition engine that will initiate the recording process.

Mike: Right.

Beau: So, without saying those wake words, you don't have an active microphone that's recording you. Now, you do have to pay attention to the light source on the top of the devices because that is your visual cue that it's listening and so there have been instances where people, people's devices have been active and listening and they didn't realize it and so that certainly could jeopardize their privacy. 

On the flip side, with the Google products, there are really two wake words that you're listening for: "Hey, Google" and "Okay, Google". And so, again, I think if you keep in mind what the wake words are and if you watch the speakers to make sure they're not listening at an inopportune time you're gonna be just fine.

Mike: Well it's helpful to hear that and it's obviously a conversation that's going to continue and the big five tech companies your Amazons and Apples and Googles and Facebooks; privacy is more up front for them than ever before and people are concerned so it's good that they're thinking about that and addressing that and knowing that these products can have so many wonderful uses and are so convenient and life-changing, having those privacy concerns put to rest is important.

Beau: And I think it's a balance, right? You have to weigh those privacy concerns with the functions and features that it's enabling and everybody at the end of the day has to make their peace with that tension.

Mike: We've been talking a lot about these voice commands and wake words and the voice assistance, ALS is of course a condition that affects your voice in many cases. When someone ends up losing their voice over a period of time, which does happen for many folks living with the disease, are you able to then operate most of these devices either via touch on a tablet and then if hand or arm function becomes an issue is that something you can, that translates to eye gaze or are we not there yet?

Beau: No, absolutely it is Mike. So, I think what you're really talking about is scalability and there was a great framework that was introduced by Kathy Yorkston out of the University of Washington and she had been participating in a multidisciplinary ALS clinic for decades and, through her research with her team, what they found is that you can think about individuals with ALS in three different groups and the groups are based on what she called functional capabilities and those three capabilities are speech, hand function,and mobility. 

So, if we think about somebody perhaps in the earlier stages of ALS they might have adequate speech, but impaired hand function, and so for them the obvious way to access the technology is by voice, voice-activated systems. As the disease progresses another group of individuals might have impaired speech and adequate hand function and so they can use direct selection by touching the screen of a device to generate speech output that would then be able to control the devices. And I think in the final stages that last group would include individuals where their speech is impaired, their hand function is impaired, and they're wheelchair-bound. And so,that's where we consider EyeGaze speech generating devices, but the speech output, whether you're touching the screen or selecting with your eyes, is going to be able to activate the devices regardless so I think we have really good options through the whole continuum of progression.

Mike: And I have to imagine those that are working on EyeGaze software and developing that technology are now starting to take that into consideration, how is this going to interface with this smart home equipment?

Beau: And the EyeGaze technology is getting better all the time.

Mike: Kristin, for individuals that are maybe on the fence about this kind of technology, are a little bit wary, they're unsure about how to dip their toes, so to speak, in the smart home universe; what advice would you give them?

Kristin: You know, I think for a lot of people they are searching for a way to maintain the control and independence in their home environment for as long as possible and smart home technology provides a way to do that. So, when smart home technology is really being used in assistive capacity it can bridge the gap between an individual's ability and the environmental demands. So, it becomes a very useful product.

Beau: That's really well said.

Mike: You're in the clinic working with a lot of these families, you must hear about how it's going and the devices they're using and I'm not expecting you to name any names, but what are the sort of things that people tell you about their experience with the smart home tech?

Kristin: Oh, boy. There are so many people that provide positive feedback about smart home technology. Just last week, a spouse of an individual living with ALS told me that, "just so you know, the Harmony Hub saved our marriage".

Mike: Oh, wow. Wow.That's great.

Beau: That is great. You love hearing those stories.

Kristin: I know. I know.

Another family was telling me about how every morning they use their Amazon Echo to stream in a comedy series and how that's been so beneficial to them and starting the day out with a laugh because ALS can really be difficult and to, you know, utilize technology in that way and start their day that way was really amazing.

Mike: Needing those lighter moments, needing those lighter moments is important and we've mentioned entertainment and recreation a few times and I think initially, as you're approaching this, it's "well, how can I be more independent and stay safer and connect with my loved ones" and maybe secondarily those entertainment functions start to come in, but that's a really, that's a great thing.

Beau: Certainly. I mean you think about "Netflix and chill". It's become part of our modern vocabulary and so I think being able to"Netflix and chill" with your spouse or your caregiver or your kids is every bit as essential before as it is now with the diagnosis.

Mike: That's wonderful to hear. The last main thing I want to ask you about because you're both obviously tracking these products so closely. What is it that you think is next? Is it going to be kind of minor improvements or iterations to the suite of stuff we already have or is there something maybe lurking on the horizon that's going to be a game changer?

Beau: So, one recent development that got me very excited was an article that was published just last month in the journal of Nature. There is a researcher named Edward Chang out of the University of California San Francisco and he and his team published a paper on synthetic speech generation from brain recordings.

Mike: Oh, wow.

Beau: So, what we're talking about is true brain-computer interface and what they were able to do was to create a synthesized version of a person's voice, controlled by the activity of the brain speech centers and I think that's going to be just groundbreaking because certainly, in the ALS community, we do encounter individuals who are unable to use eye gaze for a number of reasons. So, then we're left with low-tech or more crude options and if we could really see that brain computer interface on the horizon I think that would give people a lot of hope.

Mike: Right, that's amazing to hear. Kristin is there anything on your mind?

Kristin: Thankfully, I think, there's now a greater level of awareness of the needs of the disabled so I think a lot of tech developers are utilizing more principles of universal design to support those of varying abilities. So, I would hope that there will be better things on the horizon.

Mike: It seems like this segment is only going to grow and we're only gonna have more options and more control and for the ALS population as well as humanity that's a, that's a good thing.

Kristin: Um, hmm.

Beau: Absolutely.

Mike: Beau, what are you hearing from veterans at the VA? As we know, veterans are about two times more likely to develop ALS so there is a large ALS population within the veteran community. What are you hearing from veterans about smart home tech?

Beau: So, recently I was out to do an installation of an Alexa system in a veteran's home and after about a month or so, when he's had an opportunity to really use it and put it through its paces, I asked him I said "you know, does this technology help you live more independently?" And his answer I thought was really illuminating. He said, "absolutely and it's a perfect fit for me as a veteran because in the military I was trained to adapt, to find a way to overcome any circumstance no matter how impossible it may seem, and trained never to give up and these adaptive devices provided by the VA fit right in to that philosophy." So, I think whether it's the ALS Association or the VA, having access to this technology helps people overcome barriers. It provides independence, quality of life, and it's changing lives.

Mike: Access is so important. Thank you for sharing that with us Beau. 

Kristin: Access is empowering.

Mike: It is, it really is. Kristin talk to us a little bit about adaptability. We've said scalability, we're throwing around a lot of words, but being able to adapt these systems is important to families. What, what do you have to say about that?

Kristin: Absolutely. The adaptability, the affordability of smart home products, the reliability, and the relative ease of use really makes these products very appealing.

Mike: Affordability is important too.

Beau: Certainly.

Mike: Ten years ago you'd be paying thousands of dollars to have these kind of products installed in your home. You'd be rewiring and going into walls and now it's you're plugging something in, and maybe you're paying 50 to $100 for it, but it's going to work right away. That's, that's nice.I think another question folks have is about the use of the internet and Wi-Fi. Not everyone is in an area where excellent broadband is available or maybe they haven't yet brought Wi-Fi into their home. Are all these products reliant on Wi-Fi? Do you need that to get started in a smart home?

Beau: Yes, they are. And I think the two concerns that I always have when we use these products for smart home technology, particularly if people are depending on them for communication. 

So, for instance, the Echo Connect allows you to take your home phone and connect it to a smart speaker so if you fall and you need to call 911 you can say Alexa call 9-1-1 and that Echo Connect product will allow for that functionality, but keep in mind that these devices are dependent on Wi-Fi and they're dependent on electrical power and so when we go into these homes to set up the systems we use the Speedtest app to test the Wi-Fi and the network settings for transmission speeds to make sure it's going to be reliable and that they have enough broadband network to support all of these different devices that are on their network and then also emphasizing that if the power goes out they are without access to their system and that is a concern that we have to be upfront about.

Kristin: Absolutely and I always mention that too when I'm talking about the Echo Connect, with individuals in clinic, just so they know it can kind of be a backup 

Beau: Yes.

Kristin: to their emergency alert system.

Mike: Beau and Kristin I want to thank you both so much for joining us on the first episode of Connecting ALS. Really valuable to have your expertise in this space and to educate our audience about these sort of products. Thank you.

Beau: What a pleasure, thank you.

Kristin: Thank you so much.

Mike (narration): Thanks so much for tuning into the debut episode of Connecting ALS. We'll be sure to put a link to the article that Beau mentioned in the show notes for those interested in reading more and we'll be back next month with a new group of experts and topics.

In the meantime, make sure you subscribe at ConnectingALS.org or wherever you get your podcasts. 

We also want to hear from you about how you think we can improve the show and which topics are most important to you, we want your feedback. You can submit questions and comments to [email protected].

Connecting ALS is produced by Garrett Tiedemann and it's brought to you by the ALS Association's Minnesota, North Dakota, South Dakota Chapter.

Mike (at VA): Beau, can you give us some examples of some of these commands in action? I think it's one thing to hear it described, but another to see it and hear it in action. Are you able to demonstrate what some of these commands sound like?

Beau: Certainly Mike. As I mentioned earlier, lighting is one of the most desirable features that people are looking for and so on this speech-generating device that you see I have the voice commands programmed on the device so, whether the individual is touching the screen or using their eyes to make the selection, if I give it a command like 

Speech Device: Echo, room on.

Beau: it's going to power both lights on in the same room because I can name these lights to activate at the same time. Similarly if I want to control the lights individually I can name them light 1 or light 2 and then my voice command becomes 

Speech Device: Echo, light 1 on.

Beau: The other feature that patients and families like if they want to set the mood is that you can dim the lights to a certain percentage so if we want to bring the lighting down to 50% we can give it the command 

Speech Device: Echo, room 50%.