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 White Plains, NY - What can two seven-year-old girls -- one from New Rochelle, the other from Somers -- tell members of Congress about type 1 diabetes and the need to continually fund research for a cure? Plenty, because they live with the life-threatening disease every day.
Elizabeth Roosevelt, age 7 of New Rochelle, who's the great-great granddaughter of President Franklin Delano Roosevelt, was diagnosed with type 1 diabetes when she was five years old. Her mother, Kim, says that Elizabeth wanted to participate in the JDRF Children's Congress to help raise money to cure diabetes, much like her Roosevelt helped raise money to cure polio.
Kaitlyn Beiber, also age 7, of Somers, was only two years old when she was diagnosed with type 1 diabetes, and since that time, she and her family have raised more than $80,000 for diabetes research through JDRF's annual walks.
The girls will get their chance to educate members of Congress on what it's like to live with type 1 diabetes because they're among the 150 children throughout the U.S. selected to travel to Capitol Hill this summer to remind Congress and the Administration of the critical need to find a cure for the disease they live with every day.
Children — ages 4 to 17, representing all 50 states and the District of Columbia and all diagnosed with type 1 diabetes — will converge on Washington, D.C., to tell their stories and urge lawmakers to help find a cure during the Juvenile Diabetes Research Foundation’s Children’s Congress 2009, from June 22 to 24, 2009.
Led by JDRF International Chairman Mary Tyler Moore, JDRF’s Children’s Congress 2009 will include Congressional visits by the child delegates and a Senate hearing where Ms. Moore, select child delegates, researchers, and business and community leaders will testify on the need for continued funding for research on diabetes and related complications. Ms. Moore and the child delegates, under the theme of “Promise to Remember Me,” will ask Members of Congress to support an increase in federal funding for diabetes research.
"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”.
In type 1 diabetes – the most serious and complicated form of the disease that accounts for some $132 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 as many as a dozen times a day by pricking their fingers for 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 hypoglycemic (low blood sugar) and hyperglycemic (high blood sugar) reactions. The long-term complications of diabetes include blindness, heart attack, kidney failure, stroke, nerve damage and amputations. While usually diagnosed in childhood, it is also diagnosed in adults.
"Diabetes is such a pervasive part of your life, and people have no idea of how it really infects every area of your life and every minute of your day. I think it will be very empowering for Kaitlyn just to see so many kids of different ages all joined together for the same purpose and getting the word out," said her mother, Michelle.
Elizabeth's mother, Kim, said she hopes this experience helps her daughter realize that "she has the ability to make a difference and a positive impact for herself and others."
Cynthia Ford, of Grosse Pointe Farms, Michigan is Chair of Children’s Congress 2009. Her son Albert has type 1 diabetes.
Over 1,500 children from all 50 states between the ages of 4 and 17 applied to take part in Children’s Congress 2009. Children were selected by committee based on the need for focus in their Congressional district and in a way that divided the group evenly by ages. “Choosing the 150 delegates from the pool of over 1,500 applicants this Children’s Congress was a difficult process and a challenge,” said Ford. “Truly, all 1,500 who applied would have served this role well."
Children’s Congress has been held every other year since 1999; it has become the largest media and grassroots event held in support of finding a cure for type 1 diabetes. A once-in-a-lifetime experience, the newly-selected child delegates will follow in the footsteps of their predecessors in raising national awareness about type 1 diabetes and participating in personal advocacy at the highest level of United States government.
About JDRF
JDRF is the leader in research leading to a cure for type 1 diabetes in the world. 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 eventual and devastating complications, which may include kidney failure, blindness, heart disease, stroke, and amputation.
For more information, visit the JDRF web site at www.jdrf.org or call 800-533-CURE.
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