July Cure Champion

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Maya Grant, age 11, of Riverside, RI, Casey McNamara, age 17 of Brookline and Ceci Powderly, age 16 of Newton were chosen by JDRF, the leading global organization focused on type 1 diabetes (T1D) research, to join a delegation of children and celebrity advocates in Washington, D.C. this summer at JDRF 2017 Children’s Congress from July 24-26. Ceci, Casey and Maya will join nearly 160 other children from around the U.S. to lobby their Members of Congress and remind them of the vital need to support T1D research that could reduce the burden of this disease and ultimately find a cure.

These children—ages 4 to 17, and representing all 50 states— will participate in a number of activities on the Hill, including a Congressional Committee hearing to share personal testimonies that highlight the daily struggles of living with T1D and the need for continued funding for research projects such as the Special Diabetes Program (SDP).

Joining the U.S. Delegates will be six international Delegates traveling from Australia, Canada, Denmark, Israel, the Netherlands and the United Kingdom. Together, the Delegates will convey a clear message to the Federal Government that T1D is a global problem that requires a global effort.

“These children and their parents face the burden 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,” says Derek Rapp, JDRF President and CEO. “Children’s Congress gives the T1D community a unified voice in front of Congress and a way to urge our government leaders to continue supporting research.”

Ceci, who was diagnosed at age 4, has participated in the New England Chapter’s JDRF One Walk and Gala events, serves as a Youth Ambassador and mentor, and contributes to the chapter’s outreach and advocacy efforts.  Her parents, Gerald Powderly and Adriana Bauzá, were honored at the 35th Annual JDRF Boston Gala this past May.

Casey, who was also diagnosed at age 4, and her family are active JDRF volunteers, participating in the local JDRF One Walk and chapter Gala.  “We are so happy be a part of JDRF 2017 Children’s Congress and to share our stories with people who can make a huge impact on T1D research,” said Ceci and Casey.  “We’re excited to go to Capitol Hill alongside these powerful kids to meet with our Senators and Representatives. We are really proud to have a chance to make a difference in the lives of people with T1D.”

Maya, who was diagnosed at age 2, and her mother are both actively involved in JDRF.  Maya has spoken at several local Galas and her mother ran a half marathon to benefit the organization. This aspiring professional dancer is anxious to make a difference on Capitol Hill and spread the word of the importance of T1D funding, and is hopeful that by the time she’s an adult, she’ll be able to say, “I used to have diabetes!”

Serving as Chair for JDRF 2017 Children’s Congress will be Angie Platt of Encino, Calif., whose 13-year old son, Jonathan, was diagnosed with T1D at age 6. Angie is a member of JDRF’s International Board of Directors and previously chaired the 2013 Children’s Congress. As Chair of the event, she will help engage, support and energize all these Delegates and their families during the advocacy efforts up on Capitol Hill.

About JDRF Children’s Congress

JDRF Children’s Congress was inspired by (then) eight-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 national 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 often 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/.

About JDRF

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.