Dec.4, 2015 — Three Duchenne muscular dystrophy nonprofits have donated $5,000 each to TREAT-NMD Advisory Committee for Therapeutics (TACT), an international expert multidisciplinary body that provides objective guidance to clinicians, researchers, patient advocacy groups and industry on advancing new therapies for neuromuscular diseases.
The Jett Foundation, Michael’s Cause and Ryan’s Quest, nonprofits created by families of boys and young men with Duchenne, believe that their combined $15,000 gift will get promising treatments to patients quicker.
“All of our organizations understand the critical importance of advancing research into compounds with the most potential,” said David Schultz, Ryan’s Quest president and co-founder. “TACT has some of the most knowledgeable scientists in the world reviewing the latest neuromuscular research and we’re confident that their guidance
will have a positive impact on drug development for many years to come.”
Foundation support is critical to TACT and a win-win situation for them and the researchers, according to TACT chairperson Kathryn Wagner, MD, PhD, who is also director of the Center for Genetic Muscle Disorders at Kennedy Krieger Institute in Baltimore, MD. “The foundations support TACT’s work, which is to provide investigators with detailed, objective reviews of their research. The investigators can then share our reviews with the foundations when they request funding. So now the foundations are better equipped to make good decisions.”
Duchenne muscular dystrophy is the most common lethal genetic disorder diagnosed during childhood. It is a progressive muscle disorder that causes loss of muscle function and premature death. Because the Duchenne gene is found on the X chromosome, the disorder manifests primarily in boys.
TACT convenes twice a year to review research and the committee is meeting in Washington, DC on December 5 to review the latest round of applicants.
About the Jett Foundation
Since 2001, the Massachusetts-based Jett Foundation has worked to find treatments and a cure for Duchenne muscular dystrophy (DMD) while improving the lives of those affected by DMD. The foundation has raised more than $12 million for research. The Jett Foundation also provides resources for treatment and adaptive activities, funds Camp Promise and provides advocacy services for families affected by Duchenne. Visit www.jettfoundation.org.
About Ryan’s Quest
The mission of New Jersey-based Ryan’s Quest is to increase awareness of Duchenne muscular dystrophy with the purpose of allocating funds for research that has the greatest potential of finding a cure or treatment for the disease. Visit www.ryansquest.org.
About Michael’s Cause
The mission of New York-based Michael’s Cause is to raise awareness of Duchenne muscular dystrophy as well as direct funding for research by building a strong foundation for future treatments and a possible cure. Visit www.michaelscause.org.