JDRF Creates New Advisory Group Comprising People Affected by Type 1 Diabetes
–The T1D Voices Council will offer JDRF a diverse patient perspective to ensure that its efforts continue to reflect the needs of people with the disease–
Contact: Tara Wilcox-Ghanoonparvar, 212-479-7524; firstname.lastname@example.org
NEW YORK, May 29, 2012 — JDRF-the world’s largest charitable funder of research toward curing, treating, and preventing type 1 diabetes (T1D) -is excited to announce the formation of a new patient advisory group, the T1D Voices Council. Comprising 15-18 people affected by T1D, the council will enable even more T1D patients and families to offer their valuable perspective to JDRF’s research and advocacy goals, to help guide the organization’s activities and ensure that its efforts remain aligned with the needs of people with the disease.
“JDRF is committed to all people with type 1 diabetes, and as such, we believe our most important advisors are those affected by the disease,” said Jeffrey Brewer, president and CEO of JDRF. “Only by expanding our engagement of the T1D community and allowing it to inform our priorities can we ensure that JDRF is working toward the proper goals.”
Designed to represent the broader type 1 diabetes community, the T1D Voices Council will include members representing a range of ages, backgrounds, and connections to T1D, from young people with the disease to family members, in order to reflect the diversity of those who are affected by the disease. Chosen participants will meet 2-3 times every year to provide a patient perspective to JDRF staff and leadership on issues such as how JDRF should define a cure for T1D, what JDRF’s research priorities should be, how JDRF’s resources should be split among its priority areas, and what guidelines and expectations should be set for clinical trials.
The council will be led by JDRF’s chief scientific officer, Dr. Richard Insel, and a JDRF volunteer chair, who will also be an active member of JDRF’s International Board of Directors and a member of the organization’s Research Committee.
“We are eager to bring together this diverse group of people in the type 1 community, whose invaluable insight will help guide JDRF toward our common goal: improving lives, and curing this disease,” said the T1D Voices Council inaugural chairman, Bill Parsons, a JDRF Board member whose son has T1D.
Together, the council’s leaders will create and execute a competitive review and selection process for council participants, who will serve staggered terms of two years. JDRF chapters and affiliates will be responsible for nominating candidates for council positions to ensure that various geographic regions throughout the country are represented.
In T1D, a person’s pancreas stops producing enough insulin to survive. People with T1D must currently monitor their blood sugar levels and administer insulin via shots or an insulin pump, multiple times every day. Even vigilant management does not ward against T1D complications such as heart attack, stroke, blindness, and amputation.
JDRF is the leading global organization focused on type 1 diabetes (T1D) research. Driven by passionate, grassroots volunteers connected to children, adolescents, and adults with this disease, JDRF is now the largest charitable supporter of T1D research. The goal of JDRF research is to improve the lives of all people affected by T1D by accelerating progress on the most promising opportunities for curing, better treating, and preventing T1D. JDRF collaborates with a wide spectrum of partners who share this goal.
Since its founding in 1970, JDRF has awarded more than $1.7 billion to diabetes research. Past JDRF efforts have helped to significantly advance the care of people with this disease, and have expanded the critical scientific understanding of T1D. JDRF will not rest until T1D is fully conquered. More than 80 percent of JDRF’s expenditures directly support research and research-related education.