JDRF Children’s Congress: A Personal Reflection

Posted by on Dec 12, 2011 in Elle, Featured, JDRF Children's Congress, News | 0 comments

It’s been an extremely busy few months and I’m just NOW beginning to settle in and digest what a wonderful – and POWERFUL – year it’s been for type 1 diabetes research.

It seems like yesterday that I was just preparing for the JDRF Children’s Congress, now as I sit here, I’m reflecting on that we achieved and brought to light at that extraordinary event back in June.

Below is a guest post which I had the pleasure of writing recently for Allison at DiabetesMine.com. The post, entitled Mom at the Helm of the JDRF Children’s Conference, recapped my personal experience as Chair of the Juvenile Diabetes Research Foundation’s 2011 Children’s Congress and the emotional journey that followed during the 3-day event.

Having been raised in a family of advocates, I learned early on that in every struggle there is an opportunity to gain strength. It never ceases to amaze me how strong we can be when challenges arise – particularly when we join together.

I was amazed yet again last month when I had the honor of being the Chair of the Juvenile Diabetes Research Foundation’s 2011 Children’s Congress – a three-day event in which 150 children and teens with type 1 diabetes, from every state in the nation and several from abroad, join forces in Washington, D.C. to urge Congress and the Administration to continue and increase federal funding for diabetes research; funding necessary for better treatments and a cure for the disease.

This year, we focused our advocacy efforts on federal support and regulatory reform required to make the artificial pancreas available to millions of people like my daughter, Elle.

This device combines a continuous glucose monitor (CGM) and an insulin pump with computer software, to automatically provide the appropriate amount of insulin at the right times. It would revolutionize the quality of life for people with type 1, helping to relieve some of the burden of managing the disease. And it would keep them safer, especially overnight, when blood sugars can drop during sleep.

The artificial pancreas has proven successful in controlled hospital settings, and it’s time to test this device in more real-world conditions outside of the hospital. The FDA has promised to issue guidance for the development and testing of the artificial pancreas by December 2011, and we’re urging Congress to support these next steps. We must do everything possible to enable to development of this revolutionary technology that could save lives.

Along with the 150 young delegates and JDRF supporters, my inspiration and Children’s Congress Co-Chair was my 11-year-old daughter, Elle. Our family knew a little about type 1 because my brother-in-law has the disease, but our lives took a giant turn when over Thanksgiving 2007, Elle was diagnosed. Like so many type 1 families, we were scared and shocked, and yet grateful that we found out before it was too late.

Elle, like the other remarkable Children’s Congress delegates, stepped up to the plate with immense determination to make a difference. That’s not to say it has been easy. But thanks to the invaluable support from JDRF and to promising research, Elle and I found hope and a reason to fight.

We are just one family participating in the 2011 Children’s Congress. The dedication, perseverance, and individual triumphs of this year’s families are what created true magic in Washington, D.C. We made an important mark on our government by letting our national leaders know how much people with type 1 need their support to live better, healthier, longer lives.

Day 1: June 20, 2011

Watching the young Children’s Congress delegates and their families begin to arrive at the hotel, Elle and I could feel the excitement starting to build. Excitement was bubbling over as the families arrived with enthusiasm about meeting other children who share similar challenges, and an eagerness to tell our leaders what kind of support we need and why. Together we were making something big happen, and we could feel it. All of the children took photos with this year’s celebrity advocate, recording artist Crystal Bowersox, who smiled from ear to ear and embraced each one of the delegates. At the welcome dinner that evening, each child walked across the stage and introduced him or herself. To witness the spirit pumping through the room was incredible, and we got a taste of the fun, brave, passionate young people who embodied the success of this year’s Children’s Congress.

Day 2: June 21, 2011

Day 2 was one we will never forget. After breakfast, the children filled the hotel’s Grand Ballroom for two Town Hall events. The first was with Justice Sonia Sotomayor, speaking for the first time since her appointment about having type 1 diabetes. The 150 delegates sat on the floor around Justice Sotomayor, creating an intimate storytelling-like atmosphere in which she proceeded to tell them about her diagnosis as a child, her personal challenges, the improvements in technology, and more. She looked the children in the eyes, spoke in a slow, clear, sweet voice that seemed to hold each one of them warmly. She answered their questions, like whether diabetes gets easier as an adult, and how it affects her job, each response was candid, genuine, and positive.

The second Town Hall, “Role Models with Type 1 Diabetes,” included a panel of celebrity advocates with type 1: 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. JDRF’s Assistant Vice President of Treatment Therapies, Aaron Kowalski, Ph.D., also joined the panel, which was emceed by ESPN anchor Brian Kenny. They answered questions, talked about their lives with type 1, gave advice, and inspired all of the families who had the privilege of attending this unique event.

After the Town Hall events, we all boarded buses and rode to Upper Senate Park, where all of the delegates piled onto bleachers, the Capitol building shining in the background. Crystal Bowersox stood amongst the delegates with her guitar in hand, and led a performance of the Children’s Congress theme song, “Promise to Remember Me,” as the delegates sang along. It was a touching performance to witness.

Throughout the day, I was struck by the energy between each special guest and every Children’s Congress delegate. The connectedness created in these events was clearly mutually beneficial and greatly appreciated by all.

Day 3: June 22, 2011

Wednesday finally arrived and the momentum was building as we headed to Capitol Hill. There, the delegates met with their Members of Congress, and spoke with them about type 1, about the need for federal funding, and about the importance of the artificial pancreas. The pivotal meetings culminated in a Senate hearing chaired by Senator Susan Collins (D-ME), in which leaders from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the FDA, celebrity advocate actor Kevin Kline, and four of the Children’s Congress delegates testified about the need for research funding, and for the advancement of the artificial pancreas.

I’ll never forget what one of the delegates, Kerry Morgan from Virginia, told the Senate room filled with high-profile media, her fellow delegates, Senators, and the public. She talked about her participation in a clinical trial for the artificial pancreas, and explained that those few days with an artificial pancreas were the best days of her life. If we can move testing forward, if we can keep pushing safe and effective development and delivery of artificial pancreas technology in the United States, just imagine the days that could be had by all of the children and adults living with type 1 diabetes – every day. Furthermore, the risk of diabetes complications would decrease until a cure is finally found.

After the hearing, delegates prepared to depart. The culmination of this once-in-a-lifetime experience left us each feeling invigorated, albeit a little tired. As hugs were exchanged, it was clear that the friendships and bonds formed between the delegates and families are ones that will transcend time and distance. Just as struggle provides a chance to find strength, we gain strength through support. The families who made the 2011 Children’s Congress such an outstanding experience will continue to gain strength from each other and by supporting JDRF.

On behalf of Elle and my family, thank you to JDRF and to everyone who was a part of the 2011 Children’s Congress, for your strength and your support. Thank you for amazing me once again by proving the power of togetherness. We’re in this fight together!

Sincerely,
Stefany Shaheen
Chair Mom
JDRF 2011 Children’s Congress

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