NEWPORT BEACH, Calif., (September 19, 2023) — CureDuchenne, a leading nonprofit organization dedicated to advancing research and improving the lives of individuals affected by Duchenne muscular dystrophy, is proud to announce the launch of the CureDuchenne Caregiver Course. This free virtual resource is designed to provide invaluable guidance and support to caregivers of individuals newly diagnosed with Duchenne muscular dystrophy and those navigating the first few years of diagnosis. Duchenne muscular dystrophy is an aggressive muscle-wasting disease that leads to individuals typically using wheelchairs by age 12, with continued muscle deterioration as the disease progresses. While there is no cure for Duchenne, physical therapy remains one of the primary treatment options, and can begin immediately upon diagnosis both in a clinical setting, at school and with at-home routines.
The CureDuchenne Caregiver Course, created by CureDuchenne physical therapists Jennifer Wallace, PT, and Doug Levine, PT, features a comprehensive series of chapters that covers essential topics related to Duchenne muscular dystrophy, empowering caregivers with the knowledge and skills they need to provide the best care and enhance the quality of life for their loved ones. Topics covered include:
- Understanding Duchenne: Caregivers will find a primer on the basics of a Duchenne muscular dystrophy diagnosis and the causes of muscle damage.
- Energy Conservation: Practical strategies are offered to help caregivers minimize muscle damage and optimize their loved one’s energy levels.
- Standards of Care: An overview of the recommended standards of care for individuals with Duchenne ensures the best possible outcomes.
- The Role of Physical Therapy: Insights are shared into the critical role that physical therapy plays in Duchenne management and the difference between clinical and school-based physical therapy.
- Stretching and Appropriate Exercise: Expert advice on safe and effective stretching techniques and exercise routines tailored to Duchenne patients is provided.
- Mobility Equipment: Guidance is offered on selecting and using mobility equipment to enhance independence and mobility.
Debra Miller, Founder and CEO of CureDuchenne, commented, “We are thrilled to launch this essential resource for caregivers of individuals with Duchenne muscular dystrophy. Our mission has always been to improve the lives of those affected by this devastating disease, and the CureDuchenne Caregiver Course is a significant step in that direction. We believe that by providing caregivers with the knowledge and tools they need, we can empower them to provide the best possible care and enhance the quality of life for their loved ones.”
The CureDuchenne Caregiver Course is accessible online through a user-friendly virtual platform, allowing caregivers to learn at their own pace and revisit essential information as needed.
CureDuchenne’s Physical Therapy & Professional Program is the first physical therapy education program specifically designed to help individuals living with Duchenne prolong ambulation and delay many areas of disease progression. It also is the only program that offers a physical therapy certification to equip physical therapists with a thorough understanding of the disease and evidence-based treatments, minimizing the risk of further muscle injury. CureDuchenne’s Physical Therapy & Professional Program is consistently at the forefront of the field, evolving new methods and techniques to provide optimal care and training therapists across the globe.
For more information about the CureDuchenne Caregiver Course, please visit www.NeuroMuscularEd.org.
Twenty years ago, CureDuchenne was created with one goal: to find and fund a cure for Duchenne muscular dystrophy, the leading genetic killer of young boys. Today, CureDuchenne is recognized as a global leader in research, patient care, and innovation for improving and extending the lives of those with Duchenne. CureDuchenne’s innovative venture philanthropy model has advanced transformative treatments for Duchenne muscular dystrophy, including 17 projects that advanced to human clinical trials and multiple projects to overcome the limitations of exon-skipping and gene therapy. In addition, CureDuchenne contributed early funding to the first FDA-approved Duchenne drug, pioneered the first and only Duchenne physical and occupational therapist certification program and created an innovative biobank and data registry, accelerating research toward a cure. For more information on how to help raise awareness and funds needed for research, please visit cureduchenne.org.