Skip to content

Local Child with Type 1 Diabetes Returns from JDRF Children’s Congress on Capitol Hill

July 28, 2011

Five year old, Carson Stiglets was one of about 150 children and teenagers throughout the United States selected to represent his state on Capitol Hill last month to urge Congress and the Administration to take action to find better treatments and a cure for a disease they live with every day—type 1 diabetes. Their efforts were part of the Juvenile Diabetes Research Foundation’s (JDRF) Children’s Congress, the largest grassroots event held in support of research for type 1 diabetes.

.

Carley and Carson Stiglets

.

From June 20 to 22, the young delegates— ranging in age from four to 17 and representing all 50 states, the District of Columbia, and several other countries around the world—took part in two Town Hall discussions, one with Justice Sonia Sotomayor, and the other with a panel of influential role models in the public arena impacted by diabetes; a song performance of the Children’s Congress theme, “Promise to Remember Me” in front of Capitol Hill; individual visits for each child delegate with their Senators and Representatives; and a Senate hearing.

Carson, who lives in Prosper, was a delegate representing Texas in the Children’s Congress. Carson, who was selected to Children’s Congress through JDRF’s Greater Dallas Chapter, was diagnosed with diabetes when he was 2 years old. The day-to-day fight to stay alive is a struggle for him and his family.

“As each child and family knows, living with Type 1 diabetes requires an incredible amount of care. The numerous blood sugar checks, low and high blood sugar worries, pumps, ketones…it is so much…all the time!! Being able to share Carson’s story with our legislators was so important to us.”

– Carley and Carson Stiglets

The Town Hall events gave the delegates a chance to hear advice and inspiration from role models with type 1 diabetes, and ask them questions. In addition to Justice Sotomayor, the children met with the 2011 Children’s Congress Celebrity Advocates: Olympic gold medalist and swimmer Gary Hall, Jr., professional LPGA golfer Carling Coffing, winner of Amazing Race 17 Dr. Nat Strand, and NFL football player Kendall Simmons. They also had the opportunity to meet with recording artist Crystal Bowersox, who led them in a performance of the event’s theme song, Promise to Remember Me, and who herself met with her representatives to lobby for diabetes research funding.

“Seeing 150 precious children, singing Promise to Remember Me on Capitol Hill was an unforgettable moment. Crystal Bowersox has such a beautiful voice. The children’s voices brought tears to your eyes.”

– Carley and Carson Stiglets

.

Delegates with Crystal Bowersox

.

View a video of the delegates’ performance with Crystal Bowersox

.

.

View Video Highlights from Day 1, including rehearsal of the song

.

.

This year, delegates advocated strongly for federal action to advance the artificial pancreas. The device would combine a continuous glucose monitor and an insulin pump to automatically provide the right amount of insulin at the right times, thus improving the quality of life for people with diabetes and better protecting them from complications.

The Senate hearing, “Transforming Lives through Diabetes Research,” included testimony before the Senate Committee on Homeland Security and Government Affairs, on the importance of continued federal funding for type 1 diabetes research and for federal action to accelerate artificial pancreas development and delivery.

“Meeting with our Senator’s staff was such a gift for our family. Being able to be the voice for so many children who struggle with Type 1 Diabetes was such an honor. The meetings made an impact. We are now eagerly awaiting the FDA to approve community setting trials for the artificial pancreas.”

– Carley and Carson Stiglets

The hearing came on the heels of a recent announcement from FDA, releasing draft guidance on “Low Glucose Suspend” systems, for public comment—a long overdue step to reduce the risk of low blood sugar for people with type 1 diabetes, and an important first step toward the eventual future availability of the artificial pancreas.

“I know FDA has made the artificial pancreas a priority, and I commend the agency for that. But there is more the FDA needs to do,” said actor Kevin Kline who testified before the committee.  “Many of these children here today are wearing the components of an artificial pancreas – insulin pumps that deliver insulin and continuous glucose monitors which give sugar readouts every few minutes.  The challenge, however, is that these devices don’t yet work together to automatically control their blood sugar levels.  In other countries, there are devices available that take the first step by automatically shutting off the insulin pump when someone is low.  This is an important first step we need in the United States now. But we can do more than that.”

Mr. Kline continued: “JDRF and federally funded research have, in hospital settings, tested artificial pancreas technologies that automatically turn insulin both on and off – and the results have been amazing.  The next step is testing these artificial pancreas devices in real-world settings.

“To do this without delay, however, the FDA needs to provide clear and reasonable guidance. Many of the world’s best diabetes researchers and leading clinician organizations have joined together with JDRF to propose artificial pancreas guidance to the FDA.  And the majority of the Senate and the House have urged the FDA to give this proposal immediate consideration. Now we need the FDA to act.  Parents who are up every night and worrying every day about their children simply cannot afford to wait any longer.”

“The experience Children’s Congress provided for us in DC was truly amazing.  The personal stories shared during the town hall Tuesday morning was incredibly valuable. Each speaker made clear how difficult Type 1 Diabetes has been for them; however, each one chose to persevere. They were determined to reach their goals no matter what obstacles diabetes put before them.”

– Carley and Carson Stiglets

Get involved and join the Promise to Remember Me Campaign, and check out the recent blog post, Tell Your Story – Become Part of the Promise Community!

About JDRF

JDRF is the worldwide leader for research to cure type 1 diabetes. It sets the global agenda for diabetes research, and is the largest charitable funder and advocate of diabetes science worldwide.

The mission of JDRF is to find a cure for diabetes and its complications through the support of research. Type 1 diabetes is an autoimmune disease that strikes children and adults suddenly, and can be fatal. Until a cure is found, people with type 1 diabetes have to test their blood sugar and give themselves insulin injections multiple times or use a pump – each day, every day of their lives. And even with that intensive care, insulin is not a cure for diabetes, nor does it prevent its potential complications, which may include kidney failure, blindness, heart disease, stroke, and amputation.

Since its founding in 1970 by parents of children with type 1 diabetes, JDRF has awarded more than $1.5 billion to diabetes research, including $107 million last year. More than 80 percent of JDRF’s expenditures directly support research and research-related education. For more information, please visit the JDRF Great Dallas Chapter website.

For more information on Children’s Congress, please visit the Children’s Congress 2011 website.

.

To learn more about the JDRF Dallas chapter, visit our JDRF Dallas website!

Advertisements
No comments yet

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: