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Review for The Parent Project for Muscular Dystrophy Research Inc, Middletown, OH, USA

Rating: 5 stars  

Parent Project Muscular Dystrophy (PPMD) is an organization focused on improving the lives of those affected by Duchenne and Becker Muscular Dystrophy (DMD). They focus on DMD issues related to care, advocacy, research and education. PPMD has an exceptional Annual Conference that brings families and affected individuals together to learn from top researchers, clinicians and others in the community helpful to those living with DMD. Participants have much access to presenters and are able to ask questions after presentations and often one on one after. The PPMD website provides a wealth of information about many topics related to DMD. The organization hosts a community page linked to the main web page where friends and family members are able to meet for information and support. Another area PPMD has led the community is in Legislative Advocacy. PPMD and its family Advocates were successful in 2001 in passing the MD CARE Act which has dramatically improved NIH and CDC focus on the disorder. Advocates saw that the Act was reauthorized in 2008, a year when very little federal legislation passed, and Advocates have made great strides in increasing research for Muscular Dystrophy as a whole and education and outreach programs for DMD specifically. PPMD has reached out to other Volunteer Health Organizations who are interested in DMD both nationally and internationally. PPMD seeks to build these relationships to help the community and avoid duplication of efforts that waste resources. PPMD funds research that has the most promise to improving the lives of affected individuals. With advice from the organization's scientific adviser they have identified and funded potential opportunities that may slow the progression of DMD and/or improve the quality of life for those living with DMD. PPMD has developed a patient/family reported DMD registry. Aggregate information being collected may be useful for the research and clinical communities about DMD and the site will serve as a resource for identifying participants for future clinical trials. PPMD relies on fund raising and donations to support programs and works hard to provide to do this with as little administrative costs as possible.

I've personally experienced the results of this organization in...

the promotion of access to information to all whether it be the PPMD website or the PPMD Annual Conference

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Role:  Volunteer & I help PPMD with education issues.