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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
Guest blog by Tammy and Scott Henegar Our family’s journey with Duchenne muscular dystrophy started in March 2011 when our 4 ½ year old adventurous and sweet young boy […]
My husband Paul and I have dreamed of this day since our son Hawken was diagnosed with Duchenne almost 15 years ago! We are overwhelmed with joy to announce […]
Every Duchenne parent wants to know that their child is in good hands with their medical team. Physical therapy is an important part of that medical team, and Texas […]
