NEWPORT BEACH, Calif., January 26, 2015 – CureDuchenne, a nonprofit that raises awareness and funds research to find a cure for Duchenne muscular dystrophy, today launched CureDuchenne Cares, a physical therapy, education and outreach program for the Duchenne community. CureDuchenne has partnered with the Duchenne Therapy Network to develop the program to help educate parents and caregivers on the best standard of care for Duchenne patients. Duchenne is a progressive muscle-wasting disease that currently has no cure. The goal of the program is to improve outcomes, extend ambulation and provide guidance on standards of care for all Duchenne patients, while drugs are being developed to treat this disease.
CureDuchenne Cares features educational sessions for parents and physical therapists; instructional videos; educational materials and blogs; and information on the latest scientific developments in Duchenne research, including status and participation in clinical trials. CureDuchenne has worked with Duchenne Therapy Network since 2012. The CureDuchenne Cares team will continue to travel to local communities around the country to bring these resources to the patients and parents where they live. The first parent education session for 2015 will be held in Toledo, Ohio, on March 14.
“It is vital that parents, caregivers and physical therapists have a thorough understanding of the disease and deliver appropriate care based on the current research evidence,” said Jennifer Wallace, founder of the Duchenne Therapy Network. “Inadequate understanding of the disease can be harmful to patients already at risk for severe muscle degeneration. Extensive education for this community is crucial to our patients’ lives and ability to respond to treatments as they become available.”
“We are delighted to launch CureDuchenne Cares and work with the Duchenne Therapy Network to provide a much needed resource for the Duchenne community,” said Debra Miller, founder and CEO of CureDuchenne. “Until there is a treatment for Duchenne, we need to rely on stretching, steroids, good nutrition and adaptive activities to keep our boys as healthy as possible. This program expands our ongoing education and outreach for Duchenne families as we continue to fund research to find a cure for this devastating disease. Jennifer has treated our son since he was diagnosed and we believe she has had a positive impact on his health.”
To increase the health and wellbeing of patients living with Duchenne, the education and outreach includes best practices for Duchenne management, stretching, equipment, orthopedics, pulmonary management, cardiac management, gastrointestinal management and adapting all of these factors to the different stages of the disease.
“Jennifer has been one of the most helpful people for us. The knowledge and information that she has about stretches for muscular dystrophy is incredible,” said Ana Vaish, parent of a boy with Duchenne. “I really do not know what we would have done had she not been around. She is the most wonderful resource that a child with Duchenne can have.”
Boys with Duchenne are usually diagnosed by 5, in a wheelchair by 12 and most don’t survive their mid-20s. Currently, there is no approved treatment for Duchenne.
CureDuchenne has funded seven research projects that have advanced to human clinical trials. CureDuchenne has leveraged $100 million in pharma and biotech research and development investments. Now three of the projects CureDuchenne supported with funding, Prosensa Holding N.V., Sarepta Therapeutics and PTC Therapeutics, are the closest to becoming the first drugs to be approved for the treatment of the disorder.
Learn more about physical therapy for Duchenne patients by viewing these videos and daily stretches. Duchenne families who are interested in having a session in your area, please call CureDuchenne at 949-872-2552.
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 advanced 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 was created to help those who have been diagnosed with Duchenne Muscular Dystrophy find a physical therapist skilled in this specific area. It was founded by physical therapist Jennifer Wallace. Duchenne Therapy Network provides clients and families with excellent healthcare practice, individualized and comprehensive assessment, treatment and follow up within the scope of practice. Duchenne Therapy Network provides referrals to a network of healthcare providers to address areas of care for clients. Duchenne Therapy Network provides best practice standards, based on expert knowledge and research evidence to healthcare professionals on a regular, periodic schedule to ensure timely, accurate and standard delivery of information.