WASHINGTON, D.C., July 26, 2017 — Today, child Delegates, their parents, and celebrity supporters of JDRF’s Children’s Congress will urge a U.S. Senate committee to renew a critically important type 1 diabetes (T1D) research program, the Special Diabetes Program, before it expires on September 30.
“It’s doing great work for the millions of Americans living with this disease – like me,” said actor Paul Sparks of the Primetime Emmy award winning show House of Cards before a hearing convened by the Senate Special Committee on Aging. “Research advances literally save my life every day, and they save the lives of every one of these delegates. We are at the cusp of a whole new generation of therapies, devices, and dare I say, a cure,” Sparks said.
Children’s Congress Chair Angie Platt, whose 14-year old son Jonathan has T1D, will tell the panel that “Jonathan is living proof that your leadership and actions have made a real difference in our lives and the lives of all people with T1D.” An artificial pancreas system that was developed as a result of research supported by the Special Diabetes Program “has given Jonathan better blood sugar control than he has ever had – and it gives our family some desperately needed peace of mind.” Both the National Institutes of Health (NIH) – through SDP – and JDRF have invested significantly in artificial pancreas systems over the last decade, which led to the first FDA-approved system in 2016 and multiple others in development.
More than 160 children with T1D and their parents will attend the Senate hearing and meet with their representatives in Congress to call for renewed research funding. They are joined by celebrities also affected by the disease. The biennial Children’s Congress was convened by JDRF, the leading organization funding T1D research.
“These children and their parents face the burdens of type 1 diabetes every day, and by sharing their stories, they become the most powerful advocates we have in fighting type 1 diabetes. They represent millions of other families like mine who need the support of the government to help us end this disease,” said Derek Rapp, JDRF President and CEO. “Children’s Congress gives the T1D community a unified voice in Congress and a way to urge our government representatives to continue supporting research.”
The Senate hearing today is chaired by Susan Collins, the senior U.S. Senator from Maine. Collins is Chairman of the Senate Special Committee on Aging and Co-Chair of the Senate Diabetes Caucus. Joining her today are Committee Ranking Member Senator Bob Casey of Pennsylvania and other members of the Committee, who will hear testimony from Charlie Albair of Maine (age 10), Lorynn Watt of Pennsylvania (age 17), Dr. Griffin Rodgers, director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes of Health (NIH), as well as Sparks and Platt.
Nine celebrity role models with T1D join the young delegates on Capitol Hill, including:
• Cristina Alesci, CNN television and digital correspondent
• Brandon Denson, football player, trainer and educator
• Brec Bassinger, actress and star of Nickelodeon’s “Bella and the Bulldogs”
• Austin Basis, actor and star of CW’s award-winning drama “Beauty and the Beast”
• Max Domi, Arizona Coyotes hockey player
• Charlie Kimball, race and award-winning IndyCar driver
• Nicole Johnson, Miss America 1999, journalist and author
• Paul Sparks, actor and star of Netflix’s “House of Cards”
• Cory Vaughn, baseball player for the Maryland Blue Crabs
About the Special Diabetes Program
The Special Diabetes Program (SDP) is a critical program that provides $150 million annually for type 1 diabetes (T1D) research at the National Institutes of Health (NIH), the country’s premier medical research agency. The SDP was most recently renewed by Congress in April 2015 and is currently set to expire on September 30, 2017. Renewal of the SDP is one of JDRF’s top legislative priorities, to ensure that promising SDP-funded research can continue delivering results toward better treatments, therapies and – ultimately – a cure for T1D.
The Special Diabetes Program has strong bipartisan support. In June 2016, Senate Diabetes Caucus Co-Chairs Susan Collins (R-ME) and Jeanne Shaheen (D-NH), and Congressional Diabetes Caucus Co-Chairs Tom Reed (R-NY) and Diana DeGette (D-CO) invited their colleagues to join them on letters to Senate and House Leadership recognizing the important contributions of the SDP. Ultimately, 75 Senators and 356 Representatives signed on to the bill.
About JDRF Children’s Congress
The JDRF Children’s Congress program was inspired by then 8-year-old Tommy Solo from Massachusetts in 1999. He overheard adult JDRF volunteers talking about going to Washington, D.C. to talk to Congress and thought it was important that children go, too, and make their voices heard. JDRF Children’s Congress inspires lawmakers to remember the children who live with T1D when making decisions about medical research funding and voting on other important Federal Government issues relating to diabetes. The young Delegates’ personal stories, told in their own words, are more powerful than almost any other type of education a legislator and staff can receive.
Tommy’s idea quickly became a well-developed event, first held in 1999. Since then, JDRF Children’s Congress has occurred every other year.
To learn more about JDRF Children’s Congress, please visit http://cc.jdrf.org/.
JDRF is the leading global organization funding type 1 diabetes (T1D) research. Our mission is to accelerate life-changing breakthroughs to cure, prevent and treat T1D and its complications. To accomplish this, JDRF has invested more than $2 billion in research funding since our inception. We are an organization built on a grassroots model of people connecting in their local communities, collaborating regionally for efficiency and broader fundraising impact, and uniting on a national stage to pool resources, passion, and energy. We collaborate with academic institutions, policymakers, and corporate and industry partners to develop and deliver a pipeline of innovative therapies to people living with T1D. Our staff and volunteers throughout the United States and our six international affiliates are dedicated to advocacy, community engagement and our vision of a world without T1D. For more information, please visit jdrf.org or follow us on Twitter: @JDRF