I found out about this charity 2 years ago. I emailed the founder Pat Furlong for some information. She responded very quickly with all my questions answered . I researched how they spent there money and started to contribute. Its been a life changing event for me. I attended there last conference in Florida and left feeling such pride in there work.
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- EIN 31-1405490
- (513) 424-0696
- 1012 North University Blvd. Middletown OH 45042 USA
- www.parentprojectmd.org
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Nonprofit Overview
Causes: Health, Nerve, Muscle & Bone Diseases Research
Mission: Parent Project Muscular Dystrophy's mission is to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy (DMD) through research, advocacy, education and compassion.
Programs: Support for research to accelerate treatments and a cure for duchenne muscular dystrophy including studies in the following areas: fda draft policy guidance, combined therapeutics, serca2 gene therapy, aon-induced exon skipping ips cells and therapeutic applications, and failed regeneration in md, to name a few.
educational initiatives including online resources an annual conference held in chicago that brought scientists and families in the duchenne community together to discuss and expedite treatments, patient care, and research for a cure for the disease. Other educational efforts were promoted through a new initiative called transforming duchenne care, f. A. C. E. S. , decode duchenne, and duchnne connect.
advocacy is promoted on an annual basis through a legislative conference held in washington, d. C. Under the leadership of a consulting firm based in the area. Parents take a hands-on role in communicating with legislators during this process, for the purpose of promoting awareness and encouraging government funding for research and patient care.