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You recognize the face and the name from this year’s holiday campaign – college graduate, working on his Master’s degree, funny. But who is Mohammed “Mo” Haider? What’s his story? This month we introduce you to a great guy who has been part of this community…

My seven year old son jacob, has been sick for over a week now with bronchitis. We were riding to school one day and he looks over at me and says mama will i be better by christmas. Of course i say yes thinking he was talking about the bronchitis. He then looks at me and says you had whats wrong with me when you were little and you got better. It broke my heart to look at him and say no baby i meant the bronchitis. Of course he looks at me…

On December 6, 2012, PPMD held its inaugural End Duchenne Gala in New York City. It was a truly remarkable evening thanks in large part to the organizing committee (Catherine Collins, Anessa Fehsenfeld, Janelle Hester, Vicki Singh, and Paula Zenobio) and a room full of compassionate, generous guests...including acclaimed author,…

The 194^th workshop of the European Neuro Muscular Centre (ENMC) met in Naarden, The Netherlands, December 7-9, 2012. The title of the workshop was, “Towards Clinical Application of Antisense-mediated Exon Skipping for Duchenne Muscular Dystrophy – Opportunities and Challenges.”  25 representatives of industry, research, care and advocacy from around the world…

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12 months of IVY blogs…

I am often asked: "How can I help in the fight to end Duchenne?" and "What are things I can do to make a difference?" My answer is always Advocacy.

You are already…

Parent Project Muscular Dystrophy recently hosted the second part of our Cardiac Webinar Seriers with Dr. Larry Markham (Children’s Hospital Vanderbilt, Vanderbilt, TN) and Dr. J. Lynn Jefferies (Cincinnati Children's Hosptial, Cincinnati, OH) to discuss cardiac…

Sunday afternoons were special to me as a young boy.  Time moved slowly and the only limits were the ends of my imagination fueled by the most recent western I was watching.  The good guys wore white hats and men protected women and children from attacks by circling covered wagons.  I miss the simplicity of a child’s world and the certainty of solutions that came by following a specific formula. 

Like all kids, I wanted to grow up quickly, failing to realize what I had to give up…

Participate and Promote International Day of Persons with Disabilities!

TODAY at 3pm CDC will recognize people with disabilities with several activities, highlighted by a special Twitter Town Hall hosted in collaboration with the United Nations and other partners. This special Twitter town hall will focus on how we all can work together to provide an inclusive and accessible health environment for people with disabilities.…

Parent Project Muscular Dystrophy (PPMD) founding president and CEO Pat Furlong, has been invited to speak today at the Institute of Medicine's (IOM) Roundtable on Translating Genomic-Based Research for Health. IOM is holding a public workshop today in Irvine, CA titled "Improving the Efficiency and Effectiveness of Genomic Science Translation."

Pat is a member of IOM's Committee on Pediatric Studies and is thrilled to be participating in the discussion "The Role of…