I take great pride in serving as a member of the Muscular Dystrophy Coordinating Committee (MDCC). Legislated by the passage of the MD-CARE Act in 2001 (reauthorized in 2008), the MDCC was tasked with developing an Action Plan for the Muscular Dystrophies. John Porter, PhD, National Institutes of Health (NINDS), is leading and organizing the effort to update the current Muscular Dystrophy Coordinating Committee (MDCC) Action Plan. Dr. Porter is bringing knowledgeable people together who will consider what parts of the Plan need to be changed which will include suggestions from MDCC members and the public at large. The current Plan can be found at this link: http://www.ninds.nih.gov/find_people/groups/mdcc/MDCC_Action_Plan.pdf
As the Duchenne representative for the MDCC, I am gathering information to submit to help inform those updating the plan. I am interested in learning the Duchenne community’s thoughts about what you believe are key concerns in the areas of Research, Health Care and Living with muscular dystrophy. The Action Plan outlines priorities for the nine muscular dystrophies. Your feedback will provide insight about what is important to the Duchenne community.
In 2011, PPMD held The One Voice Summit where Duchenne stakeholders, including patients and families, looked at the Action Plan and discussed the progress we’ve made to date and what areas now needed to be updated based on that progress. The goal was to come up with strategies that can produce even greater progress for the Duchenne and Becker community. What came out of that meeting was The Strategic Directions for the Next Action Plan report which made specific recommendations to inform the update of the plan:www.parentprojectmd.org/onevoice
We’ve made even more progress as a community since that time. Which means we need to hear from you once again. Please review the summit report and think about what topics are most important to you and your family related to Research, Health Care and Living with muscular dystrophy. I will review all comments that will help us develop the report submitted to Dr. Porter.
Comments are due by November 30th.
You can either submit your comments below or email me directly, firstname.lastname@example.org
Thank you in advance for your time and comments.