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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!!

T1Ds Storm Congress: Part 3

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

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

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

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!

#jdrfcc #jdrf #studentswithdiabetes

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!!

#jdrf #jdrfcc #studentswithdiabetes

T1Ds Storm Congress: Part 1

As part of my internship at JDRF, I had the incredible opportunity of being part of the JDRF 2015 Children's Congress. And what an amazing experience it was! I always tell people that I love being around others with type 1 diabetes (T1D) but after this event that's totally an understatement. The three days of Children's Congress were quite possibly the most encouraging days that I have ever experienced.

Including all of the JDRF staff and volunteers, and of course the 163 delegates, there were around 180 people with T1D together at one time- each person with their own story, their own experiences, all linked together by their common passion and desire for a cure! From the four year old delegates who are stronger than they even realize, to the seventeen year old delegates who are so well-spoken and bursting with determination, I've never been around a more inspiring group of people!

It goes without saying that the parents of all the delegates are incredible too- I met so many of the delegates' parents and they are all kind, strong, and dedicated people! It takes a special kind of person to keep fighting and hoping day after day, watching their child/ren go through the challenges of T1D. I commend all parents (especially my own!) of people living with a chronic condition such as T1D- you all are not recognized nearly enough!

Children's Congress was a priceless journey that I know I'll never forget! I hope by sharing some of the special events that took place in those three days, you’ll feel like you were part of the journey too! So I hope you’ll enjoy reading the next few posts on my blog as I summarize some of the major highlights. If you attended Children’s Congress, I hope you’ll recall these special events with me and if you’re considering being a part of a future Children’s Congress, I hope this will inspire you to be a delegate for your state! And if you’re just reading this as a loved one of someone with T1D, I hope you’ll understand how important it is to continue advocating for a cure until we turn type one into type NONE!

So let’s start with the day leading up to the start of JDRF 2015 Children’s Congress and Day 1...

Sunday, July 12: Preparation Day Many of the JDRF staff members met at the JW Marriott to finish last minute preparations for the first day of Children's Congress (CC). After boxes of t-shirts, registration folders, and other items were brought to the hotel, we stuffed the registration bags, alphabetized them by delegate last name, and organized them for Monday’s registration!

After so much preparation, Children’s Congress was FINALLY here!! I had a great afternoon with Emily, Victoria, and the awesome JDRF staff who all worked long and hard in the months leading up to CC! We stuffed tote bags, enjoyed pizza, and stuffed more bags until we were as ready as we could be before Monday morning!

I went back home to pack my own suitcase for the three days I would spend at the JW Marriott. I realized while packing that I was just the same as the delegates- I have type 1 too. So, I had to carefully pack my suitcase with all of my necessary diabetes supplies just like the delegates did before they left for DC. I made sure to pack more test strips, OmniPod pods, insulin, and batteries for my pump than I expected to use, just in case anything were to happen! Not to mention, I packed a giant bag full of snacks and juice boxes for potential low blood sugars!

My plan was to make every effort to keep my blood sugar at a good level throughout the event. I wanted to stay focused on the delegates and the tasks I needed to accomplish. This event was all about the delegates and T1D was not about to create a distraction for me! I’m happy to report that I feel like I succeeded pretty well, only going below 70 twice and only one high reading during the three days!!

I have to say, when I went to bed that night before Children’s Congress, I felt like I was a little kid again on Christmas Eve! I was SO excited to meet and be surrounded by so many other people with T1D. The feeling I get when I am in a room full of T1Ds is honestly one of my favorite feelings- I always look around the room and think, “wow! this group could do anything, nothing is impossible!”, so I could not wait to experience that feeling again.

Monday, July 13: Day 1 of JDRF 2015 Children’s Congress I, along with Victoria and Emily, and other JDRF staff arrived at the hotel early in the morning to help with last minute preparations. We set up the registration tables and waited and waited anxiously for delegates and their families to arrive! After looking at all of the delegates' bios and seeing their scrapbooks, I couldn't wait to meet everyone in person!

Not surprisingly, all the delegates were just as sweet, funny, and awesome as I expected them to be! They were given tote bags that included a stuffed bear wearing a mini JDRF 2015 Children’s Congress t-shirt, donated by DEMDACO. I loved the delegates' reactions when I said, "Hold on, I have one more thing for you..." and then handed them the bear. The younger delegates excitedly began naming their bears, while and the older delegates' faces lit up and they laughed as I said, "You're never too old for a stuffed bear!"

Juno, a delegate from Reno, Nevada, and I connected immediately! She is five years old and was the youngest person in the state of Nevada to be diagnosed with T1D at just 11 months old. We immediately bonded after realizing we both wear the OmniPod insulin pump! She is so sweet and I wish we lived closer to each other! I later found out that Juno has a diabetic alert dog named Gizmo (JDRF's CEO, Derek Rapp inspired the name) that she wished she could've brought to DC.

Here I am below with sweet Juno! She is such an energetic, precious kid and I feel lucky to have met her and her mom Billie!

Following registration, the Delegate Social began! This was the first event of Children's Congress, so many were meeting for the first time. They brought memorabilia from their state or hometown and it was cool to see so many places represented!

Many of the celebrity T1D Role Models attended the social to hang out with the delegates. Some brought props associated with their career- Adam Lasher from American Idol brought a guitar; Carling Nolan, pro golfer, set up a mini putting green so she could help delegates get their stroke right; Sean Busby, pro snowboarder, showed off his snowboarding and cold weather gear; Brandon Denson, pro football player, tossed around a football; and Nicole Johnson, Miss America 1999 (and founder of Students With Diabetes) brought her tiara! Others attending were Aaron Kowalksi, JDRF’s Chief Mission Officer and Vice President of Research and Becky Furuta, cyclist for Team Novo Nordisk!

During the social, I sat with Toni Smith, the Social Media Manager for JDRF’s Marketing team in New York, while she took photos and uploaded them to JDRF’s Facebook and Twitter and tracked the #JDRFCC and #JDRFDC4CC feeds as well. Toni is relatively new to JDRF, so she was not there last summer when I was an intern. Amanda and Brian asked me to assist Toni to keep track of the Social Media Contest, sponsored by Medtronic. The grand prize winners would take an exclusive photo with all the T1D Role Models prior to the Town Hall panel event. In addition, the two winners (one age 4-12 and one age 13-17) would be able to sit at a VIP table with Austin Basis (for those who don’t know, Austin is an actor on the CW’s show, Beauty and the Beast)!

The contest, running from July 1 until the end of the day on July 13, the first day of Children’s Congress, required each delegate to make a creative sign that included #JDRFDC4CC. Contestants were also required to make 10 different posts on social media (Facebook, Twitter, Instagram, or any combination of the three) sometime throughout the 13 day period. Winners would then be chosen based on the amount of likes/shares/retweets brought in by each post along with the creativity of the posts.

Through tracking all of the social media posts since July 1, I was (and still am) blown away by how original, fun, educational, and not to mention cute each post was! Delegates incorporated aspects of their hometown or state to show ways their community supports them and it was awesome to see each delegates’ network of support! It is so encouraging when I think about how much awareness and education was spread through all of the posts; each time a post was shared/retweeted it reached a whole new network of people that may not have known much about T1D before! Social media has become such a huge part of today’s culture and it’s such a successful tool for spreading information, so I’m really glad that JDRF chose to include a social media contest as part of the 2015 Children’s Congress!

I tried to watch all of the posts coming into our feeds on social media, but I kept getting distracted by watching all the delegates passing out their memorabilia, having fun at the photo booth, and meeting the celebs! It was amazing how quickly everyone made friends with each other, yet it wasn’t surprising considering how fast I always make friends with another T1D! We all share a deep and immediate connection with one another because we understand what each one is going through. I am so thankful for all of my diabuddies and it makes me happy to know that so many others found their diabuddies at Children’s Congress!

Below is Evan (New York), Sean (New Jersey), and Juno having fun at the photo booth!

I met some new diabuddies at the social as well! In particular, delegate Anna Hill and her mom Laura, from Roanoke, Virginia. Anna was representing the Greater Blue Ridge Chapter, which is also the chapter I have been part of and active with since my diagnosis. Anna is 10 years old and was diagnosed when she was 7 and has already made a tremendous impact in her community by participating in the JDRF Walk, Gala, and helping out at the Vermont Ride to Cure Diabetes! The two of us quickly bonded right, as we are from the same area and we both have the OmniPod insulin pump!

Here I am below with Anna at the Delegate Social! I am so glad to know her now and can’t wait to see her again at the One Walk in September!

Next came the Welcome Dinner, which would be the first meal that everyone would enjoy together! Cynthia Rice, JDRF’s Senior Vice President for Advocacy and Policy, gave a warm welcome to all the delegates and their families, and introduced Derek Rapp, JDRF’s President and CEO. His son, Turner has T1D (I mentioned him in my last post- he’s an intern for Novo Nordisk and the four of us interns met for lunch). The Rapp family have been great advocates for T1D and JDRF!

Derek then introduced Kim Roosevelt, the 2015 Children’s Congress Chair, whose daughter, Elizabeth has T1D and was a delegate in 2009. After all the welcome introductions from our leaders, the most fun part of the evening began- ALL 163 delegates introduced themselves, each sharing their name, age, hometown, and age at diagnosis. This was my favorite part of the night; each delegate was so unique and one could instantly see how proud they were to represent their state and how passionate they were (and are) about T1D! The audience was definitely overwhelmed with cuteness seeing the younger delegates and awed by the confidence shown by the older delegates!

I was so impressed by the set up for all the meals! They even had a board that listed the amount of carbs in the food items!

Below is Cynthia welcoming all the delegates and their families!

Below is Anna giving her introduction!

After dinner I met delegate Peter Coors (below) who is lives in Charlottesville! His family is part of the MillerCoors brewing company and it’s cool that they are huge advocates for T1D and JDRF!

Following the Welcome Dinner, the JDRF staff met to review Tuesday’s events and make sure everyone understand their upcoming roles. After the staff meeting, Toni and I met to collectively track the final day of the Social Media Contest and determine our finalists. Neither of us expected it would take as long as it did to narrow down the contestants to finalists and then finalists to winners. With all the awesome posts it was virtually impossible to decide the final two winners! Toni and I agreed that the 2017 JDRF Children’s Congress should have more than two winners! So many delegates deserved to win!

Just after midnight Toni and I made our final decisions and by then we were both exhausted and quite honestly, a little delirious too! Toni was so positive and committed to the project: I feel privileged to have worked with her during Children’s Congress and JDRF is lucky to have her too! She is energetic, dedicated, and overall fun to be around and I enjoyed the time I spent with her!

And that’s just Day 1! I hope you’ll stay tuned for the rest of 2015 Children’s Congress!

#jdrf #studentswithdiabetes #jdrfcc

Living in D.C. (aka Diabetes Central)

Hi everyone! It’s been a couple weeks since I last posted, so a lot has happened at JDRF! While I can’t possibly share everything that’s been going on, I will give the highlights of some exciting events!

In the past few weeks, I have been continuing to work on projects in preparation for JDRF Children’s Congress, which is fast approaching! Specifically, my role has been editing and proofing many items for Amanda (JDRF’s head of CC), such as the Delegate Directory that will be distributed to the delegates and their guardians as well as the name tags for all the delegates, delegate guardians, special guests, staff, volunteers, partners and sponsors of the event. I have also proofed slideshows that will be playing continuously at the hotel throughout Children’s Congress. It has been awesome to be given and trusted with these projects. I truly feel like I’m making an impact on this huge event and I feel so lucky to be part of the team!!

A couple of weeks ago I attended the annual meeting for the Greater Chesapeake and Potomac Chapter of JDRF with my good friend Jenni (fellow T1D and JDRF intern from last summer). At the meeting, we heard about JDRF’s most recent research advancements and the Chapter’s accomplishments over the past year. After working for the Advocacy office on the National level for a few weeks, it was refreshing to hear from leaders of the Chapter level. Since this chapter covers northern Virginia, DC, and Maryland, there are two Board Presidents. Both of them recognized top volunteers, donors, and sponsors that all contributed to the successful year for the Chapter. I always find it so encouraging when families and teens are recognized for their advocacy efforts for T1D! A cure for this disease will ultimately be found not by just the scientists and researchers, but those who never gave up fundraising, providing the dollars necessary for research to move forward. Also at the meeting were the four local Children’s Congress delegates- all of them are so unique and passionate with their own story to share in just 1 week! Finally, the guest speaker at the meeting was Kady Helme, another awesome T1D and a staff member on the Communications team at JDRF’s New York office! Jenni and I had the pleasure of meeting Kady last summer and it was great to catch up with her! She will also be at Children’s Congress, so I’m looking forward to seeing her again there!

Me, with Kady and Jenni! Loved seeing these two fellow T1Ds!!

On June 18th, I celebrated my 8th diabirthday! Yes, you read that right.. I celebrated 8 years with type 1 diabetes! I used to dread my diagnosis anniversary every year because I associated it with the bad memories of the day that changed my life forever. I am still reminded of my doctor telling me, “this is diabetes” and not knowing what that news meant or how it would affect my life; however, instead of dwelling on the negative like I used to, I now choose to celebrate each successful year of living with T1D. It’s hard to believe it’s been 8 years already, but I am proud of how well I have managed living with T1D and am so thankful for my family and friends who have been there to support me along the way!

8 successful years living with type 1 diabetes!!

The other interns and I have been having fun bonding, both during and outside of work! One Friday a couple of weeks ago, Christina asked Victoria, Emily, and I if we would go to The Hill to deliver three thank you notes to Senators Collins, Wyden, and Isakson on behalf of a JDRF family. Needless to say, the three of us were more than happy to take on this task! Christina told us to take our time going through the Senate buildings, look around, and even told us that we were bound to get lost but that it’s okay because everyone does at first! We did end up getting lost trying to find where the Senate buildings connect underground, but we had fun exploring and it gave us great practice for when we will go to Senate meetings during Children’s Congress! None of the Senators were in their offices, but we delivered the thank you notes to their respective staff members, whom were all extremely kind and happy to pass them along for us! In fact, one of the staff members even wrote down the names of Senators with especially unique state snacks! The three of us then went on a hunt to meet the staffers, using the introduction line, “So we’ve heard your office has the best state snack…” Since it was a Friday afternoon and we weren’t interested in talking politics, most of the staffers got a huge kick out of us and gave us samples of their snacks! With Craisins from Oregon, Chobani yogurt from Idaho, peanuts from Virginia, Little Debbie treats from Arkansas, and Pop-Tarts from Kentucky, we left Capitol Hill with not only experience talking to staff and familiarizing ourselves with the Senate buildings, but also snacks to last us for days!

Inside one of the Senate buildings!

Our multitude of “state snacks” from the Senate offices!

In addition to our adventure to The Hill, Victoria, Emily, and I were also able to meet up with Turner Rapp, a fellow T1D (and son of Derek Rapp, JDRF’s CEO) who is also interning in D.C. for the summer with Novo Nordisk at their Government Affairs office. The four of us enjoyed lunch outside in Farragut Square while bonding over T1D, college life, and living in D.C.! Turner was a Children’s Congress delegate back in 2009 (the same year as Victoria!) and will be there this year as a speaker along with Kady, talking about staying active as an advocate after Children’s Congress. We look forward to seeing him there!

Finally, the three of us enjoyed a super fun, all-American night at the Washington Nationals baseball game! We attended the game on Virginia Tech vs. UVA college rivalry night, so I gave Victoria and Emily Hokie shirts to wear for the night. While the game itself wasn’t as exciting as we hoped, it was still fun to see so many Tech fans in one place again (they even played Enter Sandman)! It has been great to get to know these two girls both in and out of the JDRF office and I’m so glad we could enjoy a night at the ball field together!

Converted these two to Hokies for the night! Everyone looks good in orange and maroon :)

Such a great night at Nationals Park! The Washington Monument is to the right in the sunset!

I hope everyone had a great 4th of July weekend! I had a wonderful trip to Texas visiting my boyfriend and type 3, Alex! Although it was hard to come back after the holiday, I am so excited that Children’s Congress is just a few days away!! There is so much to be done in preparation, but I can’t wait to experience all that the event has to offer! I am looking forward to meeting all of the delegates, seeing the Marketing and Communications staff I worked with last summer, and even seeing Nicole Johnson again!! Thank you for reading and stay tuned for an update very soon with details of Children’s Congress!!

#jdrf #advocacy #studentswithdiabetes

Discovering D.C.

Hi everyone! I’m Hannah and I have type 1 diabetes (often referred to as T1D). Through the Students With Diabetes internship program, I am spending my summer interning in Washington D.C. for JDRF in their Advocacy department! JDRF is the leading non-profit foundation for type 1 diabetes, so this is an exciting opportunity for me both personally and professionally! Last summer I interned in New York City at JDRF’s Marketing department and I had an awesome experience and this summer is already proving to be just as wonderful and rewarding!

I am lucky to be interning with two other girls, Emily and Victoria, who also have T1D and we all happen to have the same insulin pump! Emily is a fellow Students With Diabetes intern and Victoria is a former Children’s Congress delegate. We have enjoyed getting to know each other and forming a bond as we take on our summer adventure in D.C.!

Below is Emily, me, and Victoria at the JDRF One Walk in D.C. that we all attended on May 31!

The Advocacy department is comprised of four teams- Legislative, Grassroots, Health Policy, and Regulatory and Reimbursement. I, as well as Emily and Victoria, have been gaining experience working in all the areas, which has been great! Our mentor, Christina, is part of the Legislative team so I have been working on various projects that are part of that area. For example, I have been helping with the New Member Outreach Initiative (NMOI) which is a project that aims to schedule meetings with all of the new members of Congress to discuss T1D and the importance of cosponsoring bills that support diabetes research, such as the Special Diabetes Program (now a law that allocates $300 million to T1D research over the next two years) and the Medicare CGM Access Act 2015. In addition, I have been doing several projects with the Grassroots team because the staff on the team are in charge of everything that involves all the JDRF Chapters and Branches and all the staff and volunteers that make up those. Specifically, the Grassroots team maintains frequent contact with the Grassroots leaders for the JDRF Regions as well as with the Advocacy Team Chairs (ATCs) for each Chapter. Since the Fiscal Year 2015 is coming to a close, there are a lot of updates to be made to spreadsheets, so I am helping the team make the transition into FY16.

Below is a map of the states with new members of Congress that JDRF has either met with or is scheduled to meet with!

Though all of the projects have been fun and provided good experience, I have to say that I have enjoyed working with the Grassroots team to prepare for the JDRF 2015 Children’s Congress the most! Children’s Congress is a three day event that occurs bi-yearly in which selected children with T1D between the ages of 4 and 17 travel to D.C. to not only meet fellow T1Ds, but also advocate to their Congressional representatives why a cure for T1D is so important. There is at least one delegate from every state and six international delegates this year that will represent countries where JDRF has an affiliation. I have proofread each delegate’s bio, printed out stationary for each delegate to write a thank you note to their representative, and taken pictures with a poster I made using the event hashtag, #JDRFDC4CC, wearing the Children’s Congress shirts the delegates will wear to encourage excitement and more social media presence! I could not be more excited to experience this huge event and to help out the Advocacy team in any way I can!

Below we are posing in front of the White House with the posters we made as part of the social media campaign for the Children’s Congress delegates!

During our first week of interning, Christina told us that we may be able to make a trip to The Hill (Capitol Hill) sometime soon, but she never said when. Last week we were told that the Diabetes Caucus, which is one of the biggest caucuses in Congress, would be meeting on Monday, June 8 for a legislative briefing on the latest bills proposed that pertain to diabetes research and improving the quality of life for people with diabetes. Victoria, Emily, and I were all very excited to be able to experience a Congressional meeting on diabetes issues, something that’s so relevant to us as T1Ds. Laura, the Senior Director for Government Relations and Advocacy at JDRF, spoke on behalf of JDRF and the House bill 1427, the Medicare CGM Access Act 2015. This bill would require Medicare to provide coverage of the continuous glucose monitor (CGM) for seniors living with T1D. In addition to JDRF, the American Diabetes Association (ADA) was present, as well as the American Association of Diabetes Educators (AADE), the Endocrine Society, and the Academy of Nutrition and Dietetics. Attending the hearing was a great experience, as I not only went with fellow staff from the Advocacy team to Capitol Hill, but I was also able to learn more about issues being addressed to Congress on behalf of people with diabetes.

From attending the JDRF One Walk near the Washington Monument with the Advocacy team my very first weekend in D.C, to a Congressional meeting, to dinner after work with Emily and Victoria, I have had an incredible time in D.C. so far! I can’t believe that this is already the end of week three as an Advocacy intern, but I can’t wait to see what all is in store for these upcoming weeks! Stay tuned for more on my D.C. adventures, but for now, thanks for reading and have a great weekend!

#jdrf #jdrfdc4cc #jdrfonewalk #studentswithdiabetes

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