I wanted to pass along a message from Stefany Shaheen, the Chair-Mom of the 2011 Children’s Congress. Please be sure to share your own message in the comments section or on Twitter by adding the hastag, #JDRFcc11.

In the week ahead, my daughter, Elle and I have the honor and privilege of serving as Chairs of JDRF’s 2011 Children’s Congress.  Our participation in this remarkable advocacy campaign was inspired by Elle’s diagnosis with type 1 diabetes when she was in third grade and only eight years old.   Together with children from all fifty states, Elle and I will strongly encourage Members of Congress to support funding for type 1 diabetes research, and seek their help to ensure that agencies like the FDA are doing everything possible to speed new and desperately needed treatments to patients, like the outstanding group of young people who are participating in Children’s Congress.

We depart for Washington, D.C. on Monday morning and we cannot wait to meet all of the families who will be participating in the Children’s Congress this year.  In our role, we have the privilege of speaking as part of the opening ceremony.  I have wrestled with what to say to the more than 150 families who all share stories like ours about the day we discovered Elle has type 1 diabetes.  Each and every one of the families we will meet next week are living with the same challenges we face and have coped with since that fateful day of diagnosis.

As my husband, Craig, wisely pointed out, everyone has a personal story to share about how life has changed as a result of a painfully unfortunate set of circumstances.  Fortunately, the Children’s Congress provides a platform for each delegate to tell his or her own story.  This is what makes the experience of Children’s Congress especially compelling for the delegates themselves and for the Members of Congress we will work hard together to reach.

What our family learned on the day Elle was diagnosed is that no day will ever again be worry free, and no night will ever be restful.  Despite doing our very best to manage insulin doses and blood sugar testing with the food Elle eats and her activity level, her blood sugar fluctuates throughout the day and night into unsafe ranges.  Every night I fall asleep after a 1:00am blood sugar test praying that Elle will not have a low blood sugar before the sun comes up.  I fall asleep praying that my first child will wake up in the morning.

If you ask Elle why she wants a cure she often says so that her parents can finally get a good night’s rest and then she says so she can feel better.  I will gladly give up sleep if it would stave off the devastating complications that lurk in Elle’s future and improve the life she is living today.  While in Washington, I plan to do all I can to tell Elle’s story in the hopes that policymakers in Congress and at the FDA will understand that living with diabetes is dangerous, and waiting for life-saving technology is not an option.

In the days that follow, we will relish this chance to give voice to the personal and powerful stories of every child who worked so hard to participate in the Children’s Congress.  Together, our stories will reinforce one another while we support each other as compatriots on a shared journey and following our time in Washington, as friends.  Together, we will be heard.

Stefany Shaheen
Chair-Mom, 2011 Children’s Congress
JDRF Government Relations Committee