Organizations partnering for the united goal of benefiting the community at large is a rare and wonderful thing. We’re thrilled to see that CureDuchenne and the Duchenne Therapy Network have joined forces to bring some of the most on-the-ground, necessary education for both physical therapists and families.
Duchenne is a progressive muscle-wasting disease that has no approved treatment or cure. Consistent physical therapy is one of the most important pieces of care for Duchenne patients to improve the quality and length of life for those affected by Duchenne. The CureDuchenne and Duchenne Therapy Network partnership includes physical therapy training sessions, parent education materials and online training videos for Duchenne families.
“Physical therapy is critical for Duchenne patients in helping to develop a comprehensive plan of care that includes parent education, stretching programs and alternative activities to conserve energy and reduce damage to muscle cells,” said Jennifer Wallace, founder and president of Duchenne Therapy Network. “The partnership with CureDuchenne allows us to further our reach to educate more parents and physical therapists to meet the specific needs of the Duchenne community.”
Duchenne impacts 1 in 3,500 boys. Boys are usually diagnosed by the age of 5, in a wheelchair by 12 and most don’t survive their mid-20s. Duchenne patients are missing a key muscle protein called dystrophin. Without dystrophin muscle cells easily become damaged and die resulting in muscle weakness and then heart and breathing failure.
CureDuchenne and Duchenne Therapy Network will launch the program with the following training sessions.
- San Jose, Calif. – September 26 (physical therapist) and September 27(parent)
- Phoenix, Arizona – October 17 (parent) and October 18 (physical therapist)
- Toledo, Ohio – Spring 2015
Additional sessions will be announced throughout the year. If you are interested in a physical therapy session in your area, please contact firstname.lastname@example.org.
CureDuchenne and Duchenne Therapy Network have also released their first educational video blog. This video, demonstrating stretching techniques, is the first in a series of informative videos on Duchenne related topics. Look for future videos on the Duchenne Therapy Network and CureDuchenne YouTube Channel. They have also created a downloadable/printable handout for parents regarding daily stretchesfor those with Duchenne. Find more physical therapy tips and educational materials at the Duchenne Therapy Network website under Care Topics.
“We are excited to partner with Jennifer Wallace and Duchenne Therapy Network to provide critical information and resources for the Duchenne community,” said Debra Miller, founder and CEO of CureDuchenne. “Jennifer has been our son’s physical therapist since he was diagnosed with Duchenne 12 years ago. She has been an important part of his care. With our partnership more physical therapists will be trained to work with Duchenne patients and more Duchenne parents and caregivers and will gain valuable information and insights about their sons’ care.”
CureDuchenne is a national nonprofit organization located in Newport Beach, Calif., dedicated to finding a cure for Duchenne, the most common and most lethal form of muscular dystrophy. As the leading genetic killer of young boys, Duchenne affects more than 300,000 boys worldwide.
CureDuchenne has garnered international attention for its efforts to raise funds and awareness for Duchenne through venture philanthropy. With the help of CureDuchenne’s distinguished international panel of Scientific Advisors, funds raised by CureDuchenne support the most promising research aimed at treating and curing Duchenne. To date, seven CureDuchenne research projects have made their way into human clinical trials – a unique accomplishment as few health-related nonprofits have been as successful in being a catalyst for human clinical trials.
About Duchenne Therapy Network
Duchenne Therapy Network is a physical therapy corporation that is committed to address the underrepresented needs of the Duchenne muscular dystrophy community. Duchenne Therapy Network physical therapists are recognized for giving the most skilled and thorough care for the physical needs of clients with Duchenne muscular dystrophy and their network of family and caregivers.