You may be thinking, “An informed consent document? No way do I want to read one of those!” But you can demonstrate the power of our community and help us write a more understandable, responsible informed consent for our community’s registry.

As many of you know,…

Two NEW and exciting races have been added to our Run For Our Sons calendar for 2015....which adventure will you…

As you know, PPMD recently facilitated a multi-stakeholder process involving patients, parents, investigators, industry, and other interested parties which culminated in a draft guidance document…

Sure, we’re in the lazy days of summer and Congress is on recess, but now is not the time to slow down on the MD-CARE Act. Let’s keep our momentum going. Take a minute to thank the House for passing the…

The lungs require the strength of many muscles to help a person to breathe and cough. As people with Duchenne grow older, the respiratory muscles, like the skeletal muscles, become weaker.…

Yesterday Sarepta released its second quarter earnings report and included an update on their Duchenne muscular dystrophy program. We asked Sarepta to provide the…

Every year I try to escape the real world for a couple of days and retreat with my family to probably my favorite place on Earth – Dowagiac. I’ve reminisced before, but this place is magical to me. It is my childhood, it is summer, it is magic. With so much going on in our community – thankfully!…

We are excited to welcome the two newest members of our Scientific Advisory Committee, Dongsheng Duan, PhD and Jill Rafael-Fortney, PhD! Our Scientific Advisory Committee, chaired by PPMD Senior Scientific Advisor Dr. Lee Sweeney, includes leading experts in basic and clinical Duchenne research and Duchenne clinical management. The committee expertly reviews every grant that comes in and offers funding or advice on…

I had no words for Scott’s death. In fact, he had been actively dying for several years. I had hoped that he might see Rebekah for one last time, though I realized they were both too sick and living in different countries made it impossible. The good news is that many people with Duchenne never find a…