Spotlight on Children’s Congress Delegates

Our Chapter is honored to have 4 remarkable young delegates represent JDRF and Houston Gulf Coast on Capitol Hill next month at Children’s Congress. This event takes place from July 8th through 10th in Washington, D.C. These youth advocates from all over the United States and 5 countries, ranging in age from 4 to 17 years old help members of Congress understand what life with T1D is like, and why research to fund life-changing therapies until a cure can be found is so vital.

From top left, Lulu Aklestad (15yo, diagnosed at 4), Madison Harlin (16yo, diagnosed at 1), Grayson Schnellhardt (13yo, diagnosed at 1) Carson Bryan (8yo, diagnosed at 2). They speak up on behalf of the millions of people living with T1D and the families and friends who love them.

As Lulu puts it, “Changes will only happen with research. We need the money to continue improve the lives of all kids and adults living with T1D. I am looking forward to telling my story to federal lawmakers so they can see firsthand how dollars for research have changed my life.” Her mother, Christine brings up a great point that she’ll also share with Congress, “The technology that exists today is only something we could dream of 10 years ago.  But, we know there is even better technology on the horizon which means a better life for our daughter. We want to do our part in making that happen.”

When asked, Madison explains why she feels it’s so important to have your voice heard.

“Having my voice heard on Capitol Hill allows me to speak on behalf of others living with T1D in order to bring about important changes that will allow us to have better care that leads to a higher quality of life.”

Bambi Streeter, Madison’s mother, wishes that one main aspect others would know about this program is the importance of more coverage at an affordable price. “Insurance companies do not know the sense of security type one individuals feel when wearing a continuous glucose monitor. Many of these individuals are children so their parents are the ones that are in charge of their care. A CGM not only provides a sense of security, but they allow individuals to have better control of their T1D because of the information they provide. I feel it’s important to have my voice heard by my local and state representatives because they do not know what it’s like living with T1D, I sure didn’t until Madison was diagnosed just after her first birthday. At that time, I didn’t know about the 8-10 times per day (and through the night) that I would need to check her blood sugar.  I didn’t know about the 3-6 insulin shots per day that she needed to KEEP HER ALIVE.  I didn’t know about the time and calculations needed to count carbs in EVERY bite of food that she eats and that then I needed to calculate the correct insulin dose based on these carbs and what her blood glucose was at the time…”

When asked about what he’s looking forward to about the upcoming trip to Capitol Hill Grayson, started “Speaking to Congress will help us get them involved to help cure diabetes. I liked meeting other legislators in Houston, but it would be super cool to talk with Congress in Washington D.C.”

Christy, Grayson’s mom notes how this program can have such an impact- “Children’s Congress is a fantastic visual for those on Capital Hills to see. It’s very humbling to be a part of something so massive. I’m sure it will be life changing for our whole family. Grayson has been fighting T1D for 13 years so we’ve learned a lot about the impact our legislators can have in helping fund trials and research for treatments and ultimately a cure. Houston constituents are extremely lucky that the majority of our legislators on both sides of the isle signed the JDRF Special Diabetes Program (SDP) letter to approve $150 million annually for the next five years. True bipartisan politics at work…”

Carson, is excited about Children’s Congress as well. When asked what he’s looking forward to about the experience, he replied “I am most looking forward to speaking to Congress in the BIG Capitol building and meeting other Type 1 kids from all over the United States. I think it is important to have my voice heard so they can know that diabetes is serious and not always easy. I want them to see how it affects kids like me.”

Misty, Carson’s mom also remarked, “We are honored to have the opportunity to speak to Congress, I think it is so important to put a face to Type One Diabetes and let our federal lawmakers see how the decisions they are making affect our families. The advancements made possible by the SDP are truly life changing. The new technology has made managing Type One easier, but we can’t stop here. We need the funding to continue to improve treatments until there is a cure and we need to make sure everyone has access to these treatments through better coverage and lower out of pocket costs.”

We couldn’t agree more. Look out Congress…here they come!!

Written by Amanda Nguyen