Of all the activities I have done with JDRF over the past seven years, none affected me as much as traveling to Washington, D.C., to tell my story at JDRF 2015 Children’s Congress. Until recently, I was the only student at my school with type 1 diabetes (T1D), so I did not know how connecting with so many kids with T1D in one room would impact me. When I met others with T1D upon arriving at the event, there was a feeling of understanding. The burden of explaining myself had been lifted. For one of the first times in my life, having diabetes felt normal.

Being at JDRF Children’s Congress gave me a feeling of empowerment knowing that I’m not alone. One example of this occurred the first night after swimming with my new friends. My pump site fell off when I turned over in my sleep and this caused an unnoticed pump failure. Tuesday morning I threw up multiple times because my blood sugar was so high. My parents couldn’t bring it down. I was frustrated that my pump failed because I had to miss part of the morning’s activities. Most importantly, I felt horrible. However, I don’t think there could be a better place to wake up sick from high blood sugars than at Children’s Congress, where almost everyone had been through the same situation. They understood what I was feeling. Many friends told me they had also had dangerously high blood sugars, but now they were able to stop it before it started by using a continuous glucose monitor (CGM).

While in DC, our mission was to ask our members of Congress to sign onto the ‘Medicare CGM Access Act’ bill, so that people of all ages could have access to a CGM. My dad and I told our Senate staffers the story of Tuesday morning to explain how passing this bill can support all people with T1D, no matter how old.

Even though I’m back in Birmingham, Alabama now, the mission of JDRF Children’s Congress continues for me and my family. Being in Washington inspired me to find more ways to promote awareness of T1D and raise funds. I have explained to many of my friends how breathtaking it was to interact with the kids and adults there. I have shared my story with other people newly diagnosed with T1D by speaking at our local JDRF One Walk™ kickoff last week.  I have even encouraged one of my friends with T1D to apply for the next JDRF Children’s Congress when applications open up again late next summer.

JDRF 2015 Children’s Congress has truly changed my life. When 163 people with T1D speak with our ‘One Voice,’ it gives new meaning to the saying “strength in numbers.” Of course, more is not better when it comes to the number of people newly diagnosed with T1D each year. But more can be better when it applies to diabetes advocacy. JDRF Children’s Congress has given me hope for a new normal!

 

After three days of advocacy, education and networking, the 2015 JDRF Children’s Congress is over. All 163 of our delegates and their families are traveling back to their home states and countries, spanning Alaska to Australia, having left an indelible mark on hundreds of Members of Congress.

Yesterday morning, our delegates and their families got up with the sun for breakfast and a last minute debrief before the short trip to Capitol Hill. This was the day they’ve all been waiting for, and the energy was palpable. Clad in their powder blue JDRF Children’s Congress t-shirts, the delegates boarded buses bound for the steps of the Capitol Building, where they took a group photo with our celebrity advocates and tremendous JDRF supporter Senator Jeanne Shaheen (D -NH).

There were only a few minutes for pictures as each delegate’s day was full of meetings in both houses. Brian tagged along with some Montanans and got to meet Senator Jon Tester (D- MT) who not only voted for the two-year renewal of the Special Diabetes Program (SDP) but also just signed on to co-sponsor (S. 804), the bill for the Medicare CGM Access Act of 2015! All told, our delegates crammed hundreds of meetings into just a few short hours, leaving no doubt to the strength and influence of JDRF and our grassroots advocacy.

The main event of the day was the “Diabetes Research: Improving Lives on the Path to a Cure” hearing with the United States Special Committee on Aging, chaired by Senator Susan Collins (R- ME). During the hearing, six witnesses testified to a standing room only chamber full of our delegates and their families. Isabelle Levesque, Amelia Cooper, Kate Hall, and Bob Amato testified on the rigors of daily life with T1D and how critical it is that Medicare includes coverage for continuous glucose monitors (CGM). Griffin Rodgers, M.D. and Habib Zaghouani, Ph.D. provided perspective from the research community, stressing the need for additional funding and explaining the different approaches researchers are taking towards better treating, preventing, and ultimately curing T1D. The senators applauded the delegates and the witnesses for taking matters into their own hands and coming to Washington, DC to testify. Most hearings don’t feature standing ovations and thunderous applause.

After almost two hours, the committee left with a tangible call to action on what the 1.25 million Americans with T1D need from Congress to help JDRF turn Type One into Type None, and it was incredibly apparent we have the support of each senator in the room.

It was an inspiring three days. To close our last blog post, we would like to send a huge thank you to all of our delegates. For months they’ve been preparing for these past three days. Each and every one of them used their voice and their story to advocate on the importance of funding research that will help us achieve our vision of a world without T1D. We’re looking forward to hearing them continue to advocate and speak for everyone affected by T1D for years to come.

We can’t wait for the next JDRF Children’s Congress. Is it 2017 yet?

After months of anticipation and a lot of hard work, we’re finally ready to storm Capitol Hill!

Yesterday was the final day of preparation for our 163 delegates. Today, JDRF Advocacy staff gave region-specific training to our delegates on how to have the most impactful Hill visits possible. We want every Senator and Congressperson to leave their delegates meetings fully understanding that the federal government MUST continue to support type 1 diabetes (T1D) research. Our delegates are ready to make that happen.

Yesterday wasn’t all work, though. During breakfast, several speakers, including our own Children’s Congress alum Kady Helme (2005 delegate), as well as Turner Rapp (2009 delegate), spoke to the audience about taking what they’ve learned here at Children’s Congress back to their home state, and about the importance of continuing to advocate and volunteer. During lunch, we gave Medtronic Social Media Contest awards to Katherine Willems (AZ) and Drake Bennett (KY) for their respective age groups.  The awards were based on the creativity of their posts and the number of likes/favorites/reTweets. Congrats to them both! In addition, our very important sponsors and foundation partners were also honored at the lunch, which you can learn more about here.

The highlight of the day for both of us was the Town Hall, hosted by Adam Schefter. At the Town Hall, our delegates had the opportunity to learn and interact with our eight T1D role models, who answered the delegates’ questions about how they are achieving their dreams despite having T1D. Each of our panelists gave funny, courageous, honest answers, which included:

The Town Hall closed with Sean Busby sharing a story on how reading delegate profiles from a previous JDRF Children’s Congress helped him move past his overwhelming initial diagnosis and understand that he could still achieve his dreams. He told the delegates that they should be looked up to for how they overcome T1D just as much as the eight role models sitting on the panel.

It was a fun, interactive learning experience for everyone, and Kady and I even picked up a few things to try in our own T1D lives. We’re both grateful that all of our role models and celebrities took the time to come down to DC and share their stories about living with T1D with us!

Tonight, our delegates have a much-deserved night off.  Tomorrow we will rise with the sun and head out to the Hill to do the work we came here to do. It’s incredibly apparent that our small army of delegates is ready to go!

Be sure to stay tuned for more updates on Twitter @JDRF and @JDRFAdvocacy and on Facebook at JDRF and JDRF Advocacy.

This is Brian Herrick and Kady Helme reporting each day from 2015 JDRF Children’s Congress.

Yesterday was a travel day for most of our delegates and staff, who came from all 50 states and 6 countries to Washington, D.C. to speak with one voice about the importance of continued federal funding for T1D research. Over 400 kids, teens, and adults trickled into D.C., registered, and got their materials for the next 3 days. Before arriving in Washington D.C. the delegates had been using the hashtag #JDRFCC4DC to post about getting ready for their big trip. During registration we had the posts on a “social wall” and the delegates were thrilled to see theirs on display.

After all delegates arrived, we had our first official event, the delegate social, where the delegates had a chance to meet each other and interact with a few of our celebrity advocates. Each delegate came with a gift from their hometown, which included buckeye candies from Ohio and pocket constitutions from Philadelphia. Our celebrity advocates were on hand to speak about what they do and how they haven’t let T1D prevent them from achieving their dreams of playing professional football and traveling the world snowboarding down the tallest peaks.  Kady and I certainly enjoyed meeting dozens of delegates and watching them make connections and post selfies on social media with the #JDRFCC hashtag.

After the social, all our delegates gathered for dinner where we heard inspirational words from Cynthia Rice, SVP Advocacy and Policy, Derek Rapp, President and CEO, and Kimberly Roosevelt, 2015 Children’s Congress Chair. The highlight of dinner was when each delegate walked onto stage and introduced themselves. Those 163 delegates are representative of the millions with T1D who we are here to advocate for. After seeing pictures of our delegates and reading their stories for the past several months, it was such a pleasure to get to see them all in person.

Behind the scenes, JDRF leadership from the US and abroad were meeting with key partners such as the embassies from each of our six affiliates in Australia, Canada, Denmark, Israel, the Netherlands, and the United Kingdom.

Day 1 was exciting, but Tuesday is when the real work begins. We’ll have a Town Hall with all our celebrity advocates and prepare for our meetings with Members of Congress on Wednesday. This Children’s Congress is certainly powerful and they have a very important story to tell.

Stay tuned tomorrow for another update, and be sure to follow us on Twitter @JDRF and @JDRFAdvocacy and on Facebook at JDRF and JDRF Advocacy.

Read Ryan’s bio

As Harriet Beecher Stowe once said, “Never give up, for that is just the place and time that the tide will turn.” I most certainly did not have any thoughts in my head that my diagnosis as a type 1 diabetic (T1D) would ever materialize into anything positive. I consider that warm day in July the turning point of my life thus far, and the day that several doors in my life closed, but the day that others opened.

I was diagnosed July 15, 2014, just 9 days after my 16th birthday, certainly NOT my idea of a sweet 16. I had spent two weeks at Fort Drum as part of a JROTC unit, with plans to join the military when I came of age and hopefully attend the United States Naval Academy in Annapolis. Much can happen in two weeks though, and I can attest to that. By the time my mother came to pick me up, I was urinating frequently, drinking water like it was the last of it on Earth, waking up with anguishing muscle spasms in the middle of the night, and suddenly I was nearly 30 pounds lighter. Now I am not a small individual by any means, I eat A LOT and I will be the first one to admit that ‘Lunch!’ is my favorite subject in school. I had left home at about 180 pounds. You do the math—that’s right, I was now 153 pounds exactly when I came home. My mother was absolutely shocked to see her new walking skeleton of a son. I was admitted to the hospital just days later. What I had thought, and had hoped, would simply be a bad case of dehydration turned out to be T1D.

Now fast forward to today. When I came across the link to apply to JDRF 2015 Children’s Congress on the JDRF Advocacy website, I had no clue that I would be chosen, let alone considered to be one of the phenomenally lucky Delegates to represent (in summertime D.C.) the numerous people living with type 1 diabetes in New York and across the United States. To say I am honored would be an understatement. There are Delegates attending who have only known life as a diabetic, and here I am not even a year out from being diagnosed and I get the amazing opportunity – one I will not take for granted – to attend. It can only be described as humbling to say the least.

I am so excited to be able to be among people just like me in this unique way, and talk with people that know exactly what it’s like to be a diabetic. Diabetes has given me confidence and has instilled a purpose in me that was never present before. I want to make a change in this country, and heck, even in the world if I can. I cannot wait to be able to meet the rest of my ‘family,’ because frankly we ARE a family. We all share a common bond that unites us and brings us together with One Voice. To all my soon-to-be brothers and sisters: See ya in Washington!

Hello. My name is Elizabeth Roosevelt. I am 12 years old and finishing up the 6th grade. I was diagnosed with type 1 diabetes (T1D) shortly after my fifth birthday. I had been drinking lots of water and using the restroom frequently, but we had no idea what was causing me to feel so badly until we went to the doctor and they gave me the diagnosis. I was on an insulin pump for almost seven years, but last year I decided to take a break because I’m a dancer and I was having to disconnect frequently—resulting in many missed hourly basal and higher blood-sugar numbers. Today when I am not competing, I wear a CGM but still do shots.

When I attended JDRF Children’s Congress in 2009, I was fairly new to T1D. It was also my first time meeting with a Member of Congress. It was great learning about how the government works, and I even got a photo of me sitting at my Congressman’s desk. But what I loved the most was spending three days surrounded by kids just like me! I will always remember spending an evening watching a movie with three other girls my age. We all checked our blood sugars, then bolused for our snacks together—and I was just like everyone else!

JDRF Children’s Congress is important because T1D research costs a lot of money and we need the government to partner with JDRF to help continue to fund it. T1D research is what has led to the pumps we use, the CGMs we wear and the improved insulin we inject daily to stay alive! Children’s Congress teaches us kids that we have a voice, too. Just because we are little does not mean that what we have to say is not important. Our Congressmen like to listen to our stories and they want to help us—we just need to teach them the best way to do that!

My biggest advice to you for Children’s Congress is to have fun! Don’t be nervous about meeting your Members of Congress—they are very nice people just like you and me. And JDRF will teach you everything you need to know before going into the meetings so you’re well prepared. It’s also important to get to know your fellow Delegates—especially on your free night. You may even meet your new best friend! Make sure you get lots of sleep, too. You will have to get up early and you may go to bed late. And don’t skip any of the sessions because you’ll really learn so much.

After Children’s Congress, my mom and I will continue to work with JDRF Advocacy. I am so happy that my mom is chairing the event this year. I definitely have plans to attend future Promise to Remember Me and New Member meetings, too.

See you in Washington!

It is JDRF Advocacy’s great honor to announce that Kimberly C. Roosevelt, of Dallas, Texas, will serve as chair of JDRF 2015 Children’s Congress to be held in Washington, D.C., this July. Kim, a prominent JDRF Advocate and volunteer leader, and mother to 13-year-old Elizabeth who lives with type 1 diabetes (T1D), will welcome more than 150 children to our nation’s capital. These Delegates, ages 4 to 17, will meet with their U.S. Senators and Representatives to put a human face on the costs of T1D for our nation and for the millions of families personally affected by the disease. Selected from more than a thousand compelling applications, these extraordinary Delegates from each state and the District of Columbia will advocate for Federal Government support for T1D research funding and thoughtful regulatory and health policies that will help accelerate life-changing therapies and ultimately a cure for T1D

Kim’s daughter, Elizabeth, was diagnosed with T1D at the age of five and was seven when she served as a Delegate at the JDRF 2009 Children’s Congress. In her Delegate yearbook entry, Elizabeth said she wanted to share her story with Members of Congress because: “I want to see diabetes cured, like polio was after my great-great-grandfather Franklin Delano Roosevelt raised money for it.” Elizabeth and her mother understand that T1D is a family disease. Everybody in the family must work to manage it, and every family member can play a part in ending it. That is why Kim has volunteered significant time, talent and heart to chairing this year’s JDRF Children’s Congress.

Achieving JDRF’s vision of a world without T1D will take both public and private resources. Kim has been a strong force not only for federal funding for research, but also for JDRF fundraising, cofounding a Fund A Cure luncheon in Dallas, and working tirelessly with the local JDRF Dallas Chapter to make others more aware of the critical need for T1D research funding.

Since her family’s inspiring experience at JDRF 2009 Children’s Congress, Kim has thrown herself headlong into advocacy work to benefit T1D research. Kim has served as the JDRF Dallas Chapter’s Advocacy Team Chair (ATC) and currently serves on the Chapter’s Board of Directors. She travels to Washington, D.C. annually for JDRF Government Day and has forged important relationships with Members of both the U.S. House and Senate and their staff on issues of importance to her family.

Kim is an attorney by trade, with a background in litigation, and has significant experience practicing law with Jones Day in their Dallas, Chicago and NY offices. Kim holds a law degree from the University of Louisville, in Kentucky.

Our JDRF Advocacy family is tremendously excited to welcome Kim Roosevelt and her family back to Washington, D.C., to help us host JDRF 2015 Children’s Congress. Under her guidance, inspiration and enthusiasm, we know this will be our most successful JDRF Children’s Congress held to date!