#studentswithdiabetes

[aqua-twin]

The #studentswithdiabetes national conference was this past weekend, so I wore my type 1 hero for the 1st night with my t1family. I miss everyone already 😭 Photo courtesy of Randomisty Network on Facebook! #t1d #actuallydiabetic #swd2017 #swd

Posted from insta! My diabetic blog is Adiabeticelf

[dykabetik]

Day 7: Quote My quote comes from an amazing leader and inspiration in the diabetes community. Nicole Johnson changed the way I saw diabetes and the way I saw myself as a diabetic. I felt weak, ashamed, and alone until I found out about her Students with Diabetes National Conference. I have met so many diabuddies, learned so many new things, and gained so much confidence and purpose from this annual conference. This quote is really meaningful to me because I strongly relate to it. I have had many low points with diabetes, and it has tried to take my life and goals away from me. Sometimes everything seems futile and overwhelming, and the only way to keep going is to redirect all this negative energy toward positive goals. So diabetes became my purpose. I changed my major and pursued work in diabetes technology. I dream of working on insulin pumps and the bionic pancreas, and thanks to the Students with Diabetes internship program, I have already gotten to experience my dream job. So thank you to Nicole Johnson and everyone who has been a part of SWD. Because you all have given my life purpose. #DiabadassChallenge #t1d #StudentsWithDiabetes #diabetes #actuallydiabetes

[t1dindc-blog]

T1Ds Storm Congress: Part 3

The third and final day of Children’s Congress began bright and early! And I mean REALLY early, with breakfast starting at 6:30 AM! (The morning was a real struggle waking up, showering, and packing to check out all before 6:15!) Buses began departing the hotel at 7:30 so that delegates could arrive at the Capitol building for an 8:15 group photo. I, along with Emily, Victoria, and other JDRF staff members, as well as some volunteers (including my friend Jenni!), and one last little delegate, four year old Stella and her mom, piled onto the last bus to make it to the Hill on time.

The group photo went well and I was impressed with how great it turned out! You would not expect a photo with 163 kids and teens to look so professional, but the JDRF photographer was phenomenal! Senator Jeanne Shaheen from New Hampshire, who is the Co-Chair for the Senate Diabetes Caucus and grandmother of T1D, was a special guest in the photo. Everyone at JDRF is so thankful for her continued support of diabetes legislation and her commitment to helping us find a cure for T1D!

After the group photo, delegates had a full day of Hill meetings with their Senators and Representatives! I had the privilege of attending three meetings with delegates from Virginia- Senator Warner, Senator Kaine, and Congressman Goodlatte. The first meeting was with Senator Warner’s staff at 9:30, so we had a little time after the photo to make our way to the Russell Senate building. The line to go through security in the building was pretty long with all the delegates arriving and Vice President Biden was on the Hill that same morning, causing security to be extra tight! As I walked with Anna, Peter, and their moms into the building, my blood sugar dropped to 55 (of course right before the first meeting)! Luckily I was well prepared with juice and fruit snacks and I was back up before the meeting started!

Arriving at Senator Warner’s office, we joined the other two Virginia delegates, Alexis and Catherine.  All four delegates were both excited and nervous about the meeting, but I assured them they would be great and the most important thing was to share their personal stories because that’s what the members and their staff will remember the most! We met with Senator Warner’s staff member, Marvin Figueroa, a Legislative Assistant for Health, Medicare and Medicaid, Education, and Women’s Issues. Marvin was extremely kind and genuinely interested in learning about each of the delegates’ stories and how they are affected by T1D. The delegates shared their scrapbooks and explained their challenges of living with T1D. Marvin was eager to learn about each delegate and about T1D! He shared with us that Senator Warner’s daughter has T1D as well, so the Senator generally tries to support diabetes legislation. Alexis, our oldest delegate, explained HR 1427, the Medicare CGM Access Act of 2015 to Marvin and encouraged him to share the bill with Senator Warner so he would hopefully choose to cosponsor it.

A CGM is a continuous glucose monitor, which, through an attachment on the body, reads a person’s blood sugar every five minutes and reports it to a wireless device. The CGM does not completely replace manually checking blood sugar, but it eliminates much of the burden. The CGM has been shown to significantly improve blood sugar control through setting off an alarm whenever the blood sugar goes above or below a certain range. There is even a mobile app now that allows the blood sugar numbers to be shared to contacts such as parents, significant others/spouses, or friends so that others can be aware of the person’s numbers. This app is especially helpful for parents of young children with T1D or for loved ones of seniors with T1D. Currently, 95% of private insurers cover the CGM device; however, Medicare does not provide coverage. The Medicare CGM Access Act of 2015 is the bill that JDRF is pushing in order to change that surprising fact. Our delegates did an excellent job of explaining the bill to Marvin and in turn he promised us that he would share the scrapbooks and bill information with Senator Warner!

Below are the Virginia delegates (L-R: Anna, Alexis, Peter, and Catherine) with Marvin!

I next attended a meeting with Congressman Goodlatte with Anna and her mom. Anna was exceptionally confident, poised, and mature (pretty awesome for a 10-year-old) throughout the meeting! Congressman Goodlatte was extremely friendly and laid back, which made him easy to talk to. The first thing he did when we came into his office was show us his wall of pictures with “famous” people and he pointed out a picture of him, Virgil Goode (a previous Virginia Congressman), and Nicole Johnson from the year that she received her Miss America title! Congressman Goodlatte was touched as Anna relayed her story and showed him her scrapbook pages. He listened intently to our concerns for lack of Medicare CGM coverage and while he did not commit to cosponsoring our bill, he showed promising interest. I am thankful that Congressman Goodlatte took the time to meet with us and am hopeful he will decide to cosponsor the bill! (He even took some photos with us after our meeting and his photographer is a Virginia Tech alum!)

I am so thankful for the chance to meet with Congressman Goodlatte and I appreciate his support of the Special Diabetes Program! 

Our final meeting of the day was with Senator Kaine’s staff members. Anna, Laura, and I walked back to Russell to meet the other three Virginia delegates for this meeting. We met with one of Senator Kaine’s Legislative Assistants, Kristin Molloy, whose focus is on Healthcare.The delegates all shared their stories, even though our Senate hearing at 2:30 had been pushed up to 1:30. Kristin explained that Senator Kaine was planning to attend our hearing and she may need to leave early so she could take notes for him! I had no idea that Senator Kaine was planning to be at our hearing, so that was exciting and encouraging news! Kristin told us Senator Kaine had just signed on that day as a cosponsor for another piece of diabetes legislation, the National Diabetes Clinical Care Commission Act (sponsored by Jeanne Shaheen and Susan Collins (Maine)), which “would bring together public and private sector experts in diabetes research and treatment to focus on improving diabetes care delivery and patient outcomes.” We were all feeling hopeful that Kaine would soon become a cosponsor for S. 804, the Medicare CGM Access Act. We were even able to have Kristin escort us to the hearing room in Dirksen!

The JDRF 2015 Children's Congress hearing was with the Senate Special Committee on Aging and led by Senators Susan Collins (Chair) and Claire McCaskill (Ranking Member). Senator Collins has been a tireless supporter of diabetes legislation, proving that she too has a passion for turning Type One into Type None! I won't even try to recap the whole hearing, but I HIGHLY recommend watching it for yourself!

Here is a link to the hearing if you would like to watch it!

http://www.c-span.org/video/?327078-1/hearing-diabetes-research

Below is Senator McCaskill (left) and Senator Collins (right). The T1D community is so appreciate of their support!

 There were four main witnesses for the hearing:

Isabelle, a Children's Congress delegate from Maine (Sen. Collins' state)

Amelia, a delegate from Missouri (Sen. McCaskil's state)

Kate Hall, a track and field athlete from Maine with T1D

Bob Amato, a former track and field coach at Providence College who has had T1D for 60+ years

This is just one view of the hearing, many other delegates were seated behind the delegates in the Well area. On the lower left corner you can see from left to right- Mr. Bob Amato, Kate Hall, Amelia Cooper, and Isabelle Levesque.

All four did an outstanding job explaining to the Committee the challenges that people with T1D go through on a daily basis. They emphasized the importance of their CGM in controlling their blood sugar, with 10-year-old Isabelle highlighting how great the mobile share app is for her parents. Amelia shared the importance of her CGM is when she runs and travels, as she has completed half marathons and traveled to over 20 countries! Kate emphasized the CGM's importance to her during her track meets because it helps her to see the direction her blood sugar is going before she competes. Finally, Mr. Amato shared how hard it is after more than 60 years to feel low blood sugar symptoms, so a CGM is literally life saving. However, now that he has Medicare insurance, he cannot get coverage for a CGM. All of the delegates and their families, along with the rest of the audience, were inspired by Mr. Amato for living successfully with T1D for so many years, but we also all hope his testimony especially will be convincing to the Senators at the hearing and all of the members that delegates met with that day. The hearing was such an incredibly moving and unique experience!

Below, in the center and on the left, you can see Senator Tim Kaine. It was so encouraging for us Virginians that he attended part of the hearing! 

Wow! If you are still reading my recap of Children's Congress at this point, thank you! I know I shared a lot (and probably more than you wanted to know), but I cannot stress enough how AWESOME those three days were! I met the most amazing, dedicated, passionate kids and teens that will forever have a place in my heart (as cliche as that sounds)! I feel so lucky to have been part of this incredible event and to know that Children's Congress made an impact on not just the delegates and their families, but members of Congress as well!

Immediately following Children's Congress, 13 Representatives from the House and 6 Senators became cosponsors of HR.1427 S.804! That's an awesome increase in support and it's all because of the delegates! I am so proud of each delegate, whether I personally met them or not, for their courage, confidence, and all their advocacy efforts. I am so thankful to have experienced the JDRF 2015 Children's Congress! I have always loved kids but kids with T1D are just a whole new level of awesome and most of them don't even realize how awesome they are! I told one delegate, Jackson, that he was awesome and to never forget it! He told me, "I'll never forget it, even when I'm an old man!" (He then proceeded to walk like an old man, too funny!)

Here I am with sweet Jackson from California! This kid's Congresswoman, Judy Chu, signed on as a cosponsor not long after meeting with him!!

Here I am with the sweet, ever so polite, and full of southern charm, Molly Russell, from Alabama! She asked me if she could come back and work with the JDRF staff at the next Children's Congress because she loved her experience so much!

Finally, I cannot talk about how great Children's Congress was without saying how great Amanda, former Grassroots Manager at JDRF, is! She put in countless hours of work to prepare for the three day event and she deserves so much credit! She truly made me feel like part of the team and not just an intern when she emailed me with projects to proofread documents or look over name tags! I didn't fully realize how important my job was until Children's Congress began, but I'm so thankful for her trust in me and for all the work she put in! Even though she's left JDRF and living in Texas, JDRF is better because of Amanda and her efforts!

Thank you all so much for reading and I hope you have a better understanding of the importance JDRF’s Children’s Congress is to advocating for funding! If these kids are our future, I have no doubt that type one will soon be type NONE!!

[t1dindc-blog]

T1Ds Storm Congress: Part 2

Day 2 of Children's Congress started bright and early with breakfast at 7:30 followed by a program at 8:30. Turner and Kady Helme (T1D and JDRF staff in New York), both former Children's Congress delegates from 2009 and 2005, respectively, spoke to the audience about possible ways to stay active as advocates after Children's Congress is over. Turner and Kady are both excellent public speakers and gave wonderful advice, sharing their experiences as advocates throughout their journeys with T1D!

Below is Kady giving her speech about her experiences with T1D advocacy. Kady is someone I look up to in so many ways and I’m so glad so many others were able to hear her story!

Before the breakfast program began, Toni and I were off to locate our two Social Media Contest winners. It was great to see their reactions! One winner was a teenage boy and he was so friendly and fun to talk to; it was especially nice to see how kind he was to our other winner, a nine year old girl! The girl’s mom was almost in tears because she was so proud her daughter had won. It was really touching to see the pride that this mom had for her daughter as we told them how much we loved all their posts

After breakfast, a delegate group photo was next. Considering how many kids there were (some 4-7 year olds can be resistant to posing for pictures), the process ran pretty smoothly!

This isn’t the best picture, but this is my view of the group as they were preparing to take the photo! 

Below you can see our photographer, Larry Lettera, preparing to take the group photo on the floor above us. Juno, on the first row, (looking up in the picture above) kept looking over at me and excitedly pointing up. I kept giving her a thumbs up and pointing above at Larry, making sure she knew to look up at him for the picture. I realized when she said, “Beary!” that she was trying to get me to look at the social wall with our picture on it! So sweet!

The social wall below automatically collected all of the pictures posted on social media that included the hashtags #jdrfdc4cc or #jdrfcc. I posted the picture in the middle of Juno and me and it came up on the social wall! 

After the group photo, Toni and I met up with the two winners to wait with them before their first prize- an exclusive photo with the Town Hall Celebrity Panel.

Below is Toni and me with Katherine and Drake, our awesome winners! 

The Town Hall event was one of the few events that was open to the delegates' families. For most of the other events, delegates and one guardian were allowed due to lack of space, food, or both in some cases. This was also the first time that most of our T1D Role Models were together in one place. Delegates had previously submitted questions that they wanted to ask the celebrity panel. The delegates were all so poised and confident! Their questions ranged from asking Este Haim and Adam Lasher how they manage their blood sugar before performing on stage, to asking Austin Basis what it's like to be the only actor on set with T1D, to questioning Brandon Denson, Becky Furuta, Sean Busby, and Carling Nolan how they keep their blood sugar in check while they're active in their sport. An audience favorite was the Montana delegate brothers asking Aaron Kowalski about his relationship with his T1D brother! He later shared about the research and technology he's most excited about. Adam Schefter, representing type 3’s, shared his role is in his wife's diabetes management. All of the role models’ answers were meaningful and inspiring!

The audience was especially moved by Sean Busby's response in which he talked about how he was initially diagnosed with type 2 diabetes and placed on the wrong medication for about three months. His snowboarding manager said they could not sponsor someone with a chronic illness. This news led to a dark time for Sean in which he was discouraged and didn’t want to deal with diabetes, something every one of us can relate to! Sean returned to the doctor and discovered that he had type 1 diabetes instead! Looking for encouragement and support, Sean used Google to research “type 1 diabetes” and naturally found JDRF. It was perfect timing, as Children’s Congress was being held that same year! After looking through the delegates’ bios and videos, Sean was encouraged and gained a new sense of hope. He told the current delegates, “It is because of you that I knew I could do this {live with diabetes}.” Listening to Sean share his story and gratitude for JDRF with the delegates from Children’s Congress was inspirational and I quickly realized the T1D celebrities look up to the delegates just as much as the delegates look up to them.

Below are the awesome and incredibly cute Hammer brothers, Taite and Trevor asking their question to Aaron Kowalski. The town hall panel is, from left to right: Este Haim, Austin Basis, Sean Busby, Brandon Denson, Becky Furuta, Aaron Kowalski, Adam Lasher, Carling Nolan, and Adam Schefter!

Lunch was next, which was dedicated to recognizing the sponsors and partners of the JDRF 2015 Children's Congress. Delegates and their families took this opportunity to thank the sponsors from their states. The social media contest winners sat at the VIP lunch table with Austin Basis, his wife, and the representative from Medtronic, the event's social media and contest sponsor. During the lunch, Katherine and Drake were recognized as the contest winners and received a trophy from Medtronic!

Anna (the delegate from Roanoke) recognized Advance Auto for their continued support of JDRF. Advance Auto is headquartered in Roanoke and donates a generous amount to the JDRF Walk every year! Hearing the sponsors' representatives speak was a reminder that the success of JDRF is due to the consistent support from the community and we are lucky to have our sponsors and partners committed to our mission!

Here is Anna accepting a recognition award on behalf of Advance Auto. She is with Nicole Johnson and JDRF President & CEO, Derek Rapp!

Following lunch, we began Hill Blitz Training sessions. Emily, Victoria, and I helped Christina to prepare the training rooms and I sat in on the training session led by Aaron Hunter, one of the managers for the JDRF Legislative team. Aaron previously worked on The Hill before joining JDRF so he was a great resource for the delegates and their families!

During the training session, Aaron briefed the families on what to expect from their meetings with their Congress members. He emphasized the main talking points for the delegates- thanking the member and/or the staff for meeting with them, thanking them for their support of the Special Diabetes Program (SDP), sharing their personal stories of life with T1D, encouraging them to support or thanking them for supporting the Medicare CGM Access Act of 2015 (HR. 1427 and S. 804), and finally thanking them again for meeting with them. All of the delegates and their families seemed prepared and excited for their meetings that would take place the next day!

After the Hill Blitz Training sessions, the three of us interns helped with memorabilia sales, giving families a chance additional CC souvenirs! Finally, delegates and their families were given a much deserved free evening to explore DC or just relax at the hotel!

A highlight of Tuesday was the chance for Emily and I to catch up with Nicole Johnson, a wonderful T1D advocate and founder of the awesome organization Students WIth Diabetes. We both shared with Nicole our internship experiences and I was especially glad to see her since I missed the SWD National Conference this year due to my brother’s graduation. Nicole has been a tireless advocate for T1D; she truly is the ultimate role model. From being a JDRF International Board of Directors (IBOD) member, to founding the SWD organization for young adults with T1D and their “type 3s”, to earning her PhD in Public Health, Nicole is a leader in the diabetes world! I am so grateful for her advocacy efforts and her work to provide an organization that focuses on connecting young adults with T1D and providing professional resources for them. Emily and I are both so glad Nicole took the time to talk with us at Children’s Congress; it’s always great to hear her words of wisdom and her encouragement!

Here I am below with Emily and the wonderful Nicole Johnson! Thank you, Nicole, for all you do for the diabetes community, especially founding Students With Diabetes. This organization has changed my life! 

Emily and I then headed to our staff meeting that gave an overview of the events scheduled for Wednesday. Following the staff meeting, we (Emily, Christina, some members of the Grassroots team, and I) started the scrapbook distribution for the Hill meetings the next day. Delegates had previously submitted scrapbook pages to the Advocacy office that were compiled by state and/or Congressional district. The delegates’ scrapbooks told their personal story of life with T1D, from the time of diagnosis to the present (or however they chose to arrange it), including lots of pictures of both the challenges of living with diabetes and their involvement with also pictures advocacy. The oldest delegate from each state was responsible for collecting the scrapbook for their state and/or Congressional district for meetings with Senators and House Representatives. Staff also provided folders containing important information discussed in the Hill Blitz training sessions along with short Bios of each of the Members of Congress the groups would be meeting with.

While distributing the scrapbooks and folders, I especially enjoyed seeing all the delegates so excited about exploring DC and hearing how they spent their evening! There was plenty of time for photos and getting to know the delegates and families even better! There was pure excitement in the air as the delegates prepared to storm the Hill!

Here I am below with delegate Uma Mera from Miami, Florida! She and her mom are so sweet and such awesome advocates! Uma’s mom, Hirania Luzardo, is the Senior Editor for HuffPost Voces, which is the Hispanic section of the Huffington Post. She uses her position to spread awareness about T1D to the Miami and Hispanic communities!! 

Here I am with the Hammer brothers, Trevor and Taite from Kalispell, Montana! These two boys have so much energy and passion for JDRF, it’s impossible to feel down when you’re around them! 

Here I am with Mark Hurlbert from Maine! He goes by Marky and his JDRF Walk team is called Marky’s Marchers! With his super positive attitude, I know he’ll keep marching on until a cure is found :)

Thanks for reading and I hope you’ll check back soon to hear about Day 3 of the JDRF 2015 Children’s Congress!! 

[diabeticangels]

Students with Diabetes 2014 National Conference

Registration is open through May 23, 2014, for the Students with Diabetes 2014 National Conference. Space is limited, so register now! You can click here to register! 

The conference, in its 4th year, is poised to break all records with attendance this year and we couldn't be happier. 

If you are between the ages of 18-30ish and live with diabetes, THIS CONFERENCE IS FOR YOU! This year's conference will be held in Tampa, Florida from June 6 - June 8, 2014, at the Holiday Inn Westshore Tampa Airport Hotel. 

We have an amazing schedule planned! You won't want to miss Actor Jim Turner as he presents his One-Man Show on Friday night. Blogger Mike Lawson of the Diabetes Hands Foundation will open Saturday morning with Diabetes humor and Saturday afternoon, Joe Solowiejczek, and Dr. Ed Damiano, the inventor of the Bionic Pancreas, will present. Sunday will be memorable, as renowned speaker Ty will share leadership lessons to motivate us all. 

Other things to expect from the conference: 

The opportunity to network with other young adults living with T1D

A chance to learn about the latest diabetes research and technology

Ways to earn extra money by participating in fun research (you can get $40 back!)

A time to interact with vendors and see "what's cool" in diabetes.

You can register online at www.studentswithdiabetes.com. Remember, space is limited!

If you have any questions, visit www.studentswithdiabetes.com. 

Sincerely, 

Nicole Johnson, DrPH, MPH, MA Founder, Students with Diabetes