BONDING THROUGH STRETCHES

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Guest blog by Paul Miller Our son Hawken was diagnosed with Duchenne in the fall of 2002.  Debra and I rolled up our sleeves and began a journey we had not anticipated.   We found there were many variables to managing this disease.  One of these is physical therapy.  Maintaining the health of the muscles is […]
As a community, we need to continue our efforts to find a cure for every single person impacted by Duchenne. That means funding research that treats all aspects of the disease.  That includes anti-inflammatory and anti-fibrosis therapies, gene therapy and gene editing; and cardiac therapies that address the leading cause of death for Duchenne.  As […]
Yesterday the House of Representatives passed the draft of the 21st Century Cures Act. It is slated for a vote in the Senate early next week.       The new draft includes: $4.8 billion in new funding for the National Institutes of Health (NIH) $500 million in new funding for the Food and Drug […]
Thanksgiving is more than a chance to appreciate what we have. It’s also about taking the time to appreciate the people who help us in our journey, those who share in our hopes and dreams, and our struggles and our pain. For all of you, we are full of gratitude. We are filled with gratitude […]
  The final decisions could be made today on the 21st Century Cures Act and the OPEN ACT – a provision that could be transformational for rare disease patients. CureDuchenne signed the letter of support. Despite outreach from constituents, we are still hearing pushback from Sen. Warren on the OPEN ACT. If you could please […]
  Understanding a patient’s motivation for treatment is the key for a physical therapist to empower that patient for the best outcome. For a patient with Duchenne muscular dystrophy, a terminal disease that deteriorates muscle tissue, this empowerment can be the difference between more cherished ambulatory time or losing their drive for therapy altogether. In […]
Thank you to Marathon Pharmaceuticals for providing updated information about deflazacort access and regulatory status during a webinar this week.  The webinar addressed Marathon’s Expanded Access Program for deflazacort and what a potential FDA approval of deflazacort would mean in terms of access to the drug in the U.S.  The webinar has been archived.  https://cc.readytalk.com/play?id=hl12zw. […]
  As a parent of a son with Duchenne I have been frustrated that the data presented to the FDA does not match the patient experience.  I personally know so many patients who have been in recent clinical trials that are doing much better than expected and are seeing a slower progression of their disease […]
  A physical therapist is required to take on multiple roles while caring for their patients, and this is especially true when treating a complex condition such as Duchenne muscular dystrophy.  It is these multiple roles and complicated diseases that keep Jerry Hsu, an Orange County, California-based physical therapist, excited about his job every day. […]

Learn. Engage. Empower.

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Caring for a child with Duchenne can be daunting, complicated, and often times, isolating. But it doesn’t have to be. On October 22, CureDuchenne Cares will hold its inaugural Family Summit bringing together Duchenne families, medical providers and researchers for a daylong event focused on education and fellowship. The goal of this summit is to […]
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