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BONDING THROUGH STRETCHES
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 […]
TAKE ACTION FOR ALL THOSE WITH DUCHENNE
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 […]
21ST CENTURY CURES ACT PASSED BY HOUSE
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 […]
WITH GRATITUDE THIS THANKSGIVING
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 […]
Help Support the 21st Century Cures Act and the OPEN ACT
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 […]
Spotlight on Sandi Preston, PT, CureDuchenne Cares Certified Physical Therapist
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 […]
Marathon Webinar: Update on Deflazacort Access and Regulatory Status
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 […]
Better Designed Clinical Trials Now
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 […]
Spotlight on Jerry Hsu, PT, CureDuchenne Cares Certified Physical Therapist
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 […]