JDRF's Children's Congress 2009

WASHINGTON, D.C., June 22, 2009 -- More than 150 children and teenagers throughout the U.S. with type 1 diabetes are in Washington, D.C. this week to advocate for funding for type 1 diabetes research.  They'll be joined by JDRF International Chairman Mary Tyler Moore, Nick Jonas of the Grammy nominated multi platinum group The Jonas Brothers, boxing legend Sugar Ray Leonard, and other advocates at the sixth Children's Congress of the Juvenile Diabetes Research Foundation.

 Children's Congress, the largest grassroots advocacy event held in support of research for type 1 diabetes, will include a visit with President Barack Obama at the White House, a Town Hall panel of athletes and celebrities impacted by diabetes, and a hearing on Wednesday before the Senate Committee on Homeland Security and Governmental Affairs to request federal funding for diabetes research and remind Congress about the urgent need for a cure for the disease.

The Senate hearing, "Type 1 Diabetes Research: Real Progress and Real Hope for a Cure," will include testimony from Ms. Moore, Mr. Jonas, Mr. Leonard, Dr. Griffin Rodgers, Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and four children with type 1 diabetes. The hearing will be chaired by Senator Susan Collins (R-ME).   Following the Senate testimony, the delegates and their families will visit individually with their respective Members of Congress to educate for a cure.

A Town Hall panel, "Role Models in Diabetes," on Tuesday will enable delegates to interact with athletes, musicians and doctors who also live with type 1 diabetes - and share their experiences on how they're managing the disease and fulfilling professional careers at the same time.  Panelists will include professional concert cellist Alisa Weilerstein; Miss Black USA 2007 Kalilah Allen-Harris, NFL player Jared Allen and Dr. Aaron Kowalski, JDRF's Research Director for the Artificial Pancreas Project.  ESPN broadcaster Brian Kenny will moderate the forum.

 The 150 children- ranging in age from 4 to 17 years old represent each state.  Joining the children in Washington, D.C. are five International Delegates from Australia, Canada, Denmark, Israel, and the United Kingdom.

"The day that you or your child is diagnosed with type 1 diabetes is a day you will never forget," said Ms. Moore, who has had type 1 diabetes for almost 40 years. "Members of Congress will now have the chance to give these children and their parents another day they will never forget. Instead, this time will be a day of hope instead of a day of fear".

The Senate Co-Chairs of Children's Congress 2009 are Sen. Collins  and Sen. Lincoln, and the House Co-Chairs are Rep. Diana DeGette (D-CO) and Rep. Mike Castle (R-DE).

Cynthia Ford, of Grosse Pointe Farms, Michigan is Chair of Children's Congress 2009.  Ms. Ford, her husband Edsel and son Albert, who has type 1 diabetes, serve as the designated Chair Family.

"Our entire family understands what a vital role this event plays in the furthering of our mission to cure diabetes. We are honored and excited to be leading such an extraordinary group of delegates who truly will have all the Washington leaders knowing they need to 'Promise to Remember' all of us who crave a true cure for diabetes and its complications."

Children's Congress, held every other year since 1999, has become the largest media and grassroots advocacy event held in support of finding a cure for type 1 diabetes. A once-in-a-lifetime experience, the delegates help raise awareness about type 1 diabetes, and participating in personal advocacy at the highest level of U.S. government.   

In type 1 diabetes - the most serious and complicated form of the disease that accounts for at least $174 billion in annual health care costs in the U.S. alone - a person's pancreas stops producing insulin, the hormone that enables people to get energy from food.  To survive, people with type 1 diabetes must test their blood sugar levels up to four or more times a day by pricking their fingers to draw  blood, and then administer  insulin through multiple daily injections, or the use of a continuous infusion insulin pump. 

While trying to balance insulin with the amount of food eaten (which raises blood sugar) and exercise (which lowers blood sugar), people with type 1 diabetes must constantly be prepared for potential life-threatening low or high blood sugar levels.  Just as devastating, the long-term complications of diabetes include blindness, heart attack, kidney failure, stroke, nerve damage and amputations.  While usually diagnosed in childhood, type 1 diabetes can also be diagnosed in adults.

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JDRF Promise Meetings

As part of their effort to educate our Senators and Congressmen about type I diabetes the JDRF schedules group meetings between the people effected by type I and their local legislators.  You may remember that Arden and I attended one last year with our Senator.  So if you are the parent of a child with type I please consider attending a meeting and sharing your story.  Who knows... you may be the reason that the Special Diabetes Program doesn’t experience a cut in federal funding.  

From the JDRF: Because you or someone you know lives with type 1 diabetes everyday, you know that we need a cure.  JDRF’s top priority is securing the necessary research funding to discover a cure for type 1. Along our path toward a cure there will also be milestones achieved that will make it easier for people with type 1 to manage the disease, reduce complications, and enjoy a better quality of life.

The 2009-2010 Promise to Remember Me Campaign will be focused on both of these priorities. JDRF advocates will be scheduling meetings with their Members of Congress to:

• Ask them to co-sponsor legislation to, once again, extend the Special Diabetes Program and avoid a 35% reduction in federal funding for type 1 research; and

1. • Make sure that the needs of those with diabetes are included in legislation to reform America’s healthcare system, including providing access to quality and affordable coverage without exclusions or penalties for pre-existing conditions.

The goal of the Promise Campaign is to communicate this message through personal meetings with Members of Congress when they’re at home. 

Signing up to attend a Promise Meeting only takes a moment and you can do it at this link.