NINDS announces grant to support work of Parent Project Muscular Dystrophy

Parent Project Muscular Dystrophy (PPMD), the largest non-profit organization in the United States focused on finding a cure for Duchenne muscular dystrophy (Duchenne), announced that it has received a grant from the National Institutes of Neurological Disorders and Stroke (NINDS), part of the National Institutes for Health. This grant was awarded to fund PPMD's ongoing interest in maximizing the clinical trial experience for participating patients with Duchenne muscular dystrophy.

PPMD will survey and interview the Duchenne community regarding the clinical trial experience. According to PPMD's Senior Director of Education and Outreach, Holly Peay, MS CGC, "We have a great advisory committee of patients with Duchenne, parents, clinicians, researchers, and industry.  Our goal is to analyze hopes and expectations in the clinical trial experience, comparing reasonable hopes and expectation versus unrealistic ones so we can make recommendations that improve the experience for the participating families. This information will help inform clinicians as they prepare to take their prospective therapies through the clinical trial process. We are so grateful to NINDS for supporting the work of Parent Project Muscular Dystrophy."

As part of Parent Project Muscular Dystrophy's comprehensive approach to fighting to end Duchenne, Ms. Peay explains the importance of funding not just promising research therapies, but also staying in touch with the community to make sure patients are receiving exceptional care and the needs of families are being met. She continues, "While we are all fighting to end Duchenne, it is important for families to live well, today. PPMD is committed to working for both new therapies for our sons and happier days for our families. Not only are we continually supporting promising research, but we have several programs – including this one funded by NINDS – that seek to help families live better lives, albeit ones affected by Duchenne.  Yes, we are calling on the community to fill out surveys and participate in interviews. But PPMD is not just interested in gathering information and publishing in a journal. In addition, we get information from our families, and then turn that information into plans, recommendations, and interventions to benefit the community."