Duchenne muscular dystrophy, an inherited genetic disease with no cure and no treatment, causes progressive muscle degeneration, leaving patients use a wheelchair by their mid-teens. The average life expectancy of someone with Duchenne is their mid-20s.
Through the new website, Duchenne families can find valuable information about how to keep those with Duchenne healthy, including instructional videos with tips and techniques for at-home physical therapy and stretching routinesdesigned to keep children and young adults mobile, and nutritional recommendations for all-around better health.
“There are treatments for Duchenne in the pipeline, and it’s important to keep boys as healthy as possible so those potential treatments can provide the optimal benefit,” said Debra Miller, founder and CEO of CureDuchenne. “CureDuchenne Cares provides ongoing education and outreach for Duchenne families as we help the community join together to find a cure for this devastating disease.”
The website also offers recommendations for helpful equipment and school modifications to maintain independence for as long as possible. There is a section on the website with the latest information about research breakthroughs and the latest clinical trials.
In addition to the website, the CureDuchenne Cares program includes continuing education courses for physical and occupational therapists and free workshops for parents and caregivers. These interactive sessions provide hands-on information and resources for those providing care for those with Duchenne. CureDuchenne Cares has partnered with Duchenne Therapy Network and leading physical therapist Jennifer Wallace who has been treating Duchenne patients for more than 13 years. CureDuchenne’s Chief Scientific Advisor Dr. Michael Kelly provides updates on research and clinical trials during the sessions. Duchenne parents can connect with each other, share their experiences about living with the disease and meet representatives from pharmaceutical companies that are developing treatments for Duchenne.
“I learned a lot at the CureDuchenne Cares workshop that that will help my son today and in the future,” said Michael James, a Duchenne dad and physical therapist from Chula Vista, Calif.
The website provides easily accessible reminders and updates of the valuable lessons from the workshops. This new video shows highlights from a recent session.
Upcoming CureDuchenne Cares sessions include:
- July 17, Maple Valley, WA – physical therapist continuing education course
- July 18, Maple Valley, WA – parent/caregiver workshop
- August 14, Shakopee, MN – physical therapist continuing education course
- August 15, Bloomington, MN – parent/caregiver workshop
- September 18, Chattanooga, TN – physical therapist continuing education course
- September 19, Chattanooga, TN – parent/caregiver workshop
- October 16, Bedminster, NJ – physical therapist continuing education course
- October 17, Bedminster, NJ – parent/caregiver workshop
Additional sessions will be scheduled throughout the rest of the year and will be announced soon. For more information about the CureDuchenne Cares sessions, please visit the new website at www.CureDuchenneCares.org.
CureDuchenne was founded in 2003 with a focus on saving the lives of those with Duchenne muscular dystrophy, a disease that affects more than 300,000 boys worldwide. With support from CureDuchenne, seven research projects have advanced to human clinical trials, and three pharmaceutical treatments could be approved by the FDA within the next year. These treatments may lessen the effects of the disease for those with certain mutations of Duchenne, but there is still much work to be done to find a cure. For more information, please visit CureDuchenne.org and follow us on Facebook, Twitter and YouTube.