It is vital that those caring for children and young adults with Duchenne muscular dystrophy have a thorough understanding of the disease and deliver appropriate care, based on the current research evidence. Inadequate understanding of the disease can be harmful to patients already at risk for severe muscle degeneration. CureDuchenne, a nonprofit that funds research to find a cure for Duchenne, pioneered the community based CureDuchenne Cares program to address this unmet need. CureDuchenne Cares provides an interactive education and outreach program for parents, caregivers, physical therapists and other medical professionals of patients with Duchenne. With support from biotech and pharameutical companies, CureDuchenne Cares travels to local communities to bring critical resources that can positively impact patients’ lives and their ability to respond to treatments as they become available.
CureDuchenne also provides advanced training to physical therapists through its CureDuchenne Cares Certified Physical Therapist Program to help physical therapists and other health care professionals deliver superior care to meet the specialized needs of Duchenne patients. This certification program ensures that trained professionals will be available to treat Duchenne patients across the country.
Dr. Eric Olson from the Olson Laboratory at the University of Texas Southwestern Medical Center Department of Molecular Biology will be a guest speaker at the first CureDuchenne Cares family session of the year on January 28 in Dallas. Dr. Olson will speak about his gene editing and CRISPR research. The free family and caregiver workshop also includes practical information on physical therapy, a medical equipment demonstration, research updates from pharmaceutical representatives and current clinical trials. The physical therapist continuing education session is on January 27.
“We created CureDuchenne Cares to answer the call of parents who need advice and best practices for managing the various facets of Duchenne in a manner that will improve their child’s quality of life and encourage the child’s amenability to pharmaceutical treatments as they become available,” said Debra Miller, founder and CEO of CureDuchenne. “We want all those impacted with Duchenne to stay as healthy as possible for as long as possible and be empowered with the latest information on the standard of care and available clinical trials for Duchenne.”
CureDuchenne Cares increases the health and wellbeing of patients living with Duchenne through educating parents, caregivers, clinicians and physical therapists on best practices for Duchenne management, stretching, equipment, orthopedics and adapting all of these factors to the different stages of the disease. This program informs families on the latest scientific developments in Duchenne research, including status and participation in clinical trials.
The 2017 program features Family and Caregiver Workshops, Professional Continuing Education Course for physical therapists and other healthcare professionals, and Family Summits.
- January 27– Dallas, TX Professional Continuing Education Course
- January 28– Dallas, TX Family & Caregiver Workshop (Free)
- February 24– Phoenix, AZ Professional Continuing Education Course
- February 25– Phoenix, AZ Family & Caregiver Workshop (Free)
- March 25– Atlanta, GA Family Summit (Free)
- April 8– San Diego, CA Family & Caregiver Workshop (Free)
- April – Milwaukee, WIProfessional Continuing Education Course/Family & Caregiver Workshop
- May – Anaheim, CA Family Summit (Free)
- May – Los Angeles, CAProfessional Continuing Education Course
- June – Austin, TX Family Summit (Free)
- September – Birmingham, ALProfessional Continuing Education Course/Family & Caregiver Workshop
- September– Philadelphia, PA Professional Continuing Education Course/Family & Caregiver Workshop
- October – Indianapolis, INProfessional Continuing Education Course/Family & Caregiver Workshop
- October – Toronto, CanadaFamily & Caregiver Workshop (Free)
- November – Northern CA Family Summit (Free)
“Physical therapy continues to be one of the primary treatment options for those with Duchenne,” said Celeste Graham, PT, Director of Physical Therapy, CureDuchenne. “A daily physical therapist-guided program is critical for those with Duchenne to help maintain function and quality of life. Training parents and caregivers as well as physical therapists for optimal care is vital.”
CureDuchenne Cares services consists of hands-on educational events, an educational website, video blogs, webinars, online FAQs, patient registry and parent/caregiver resource guides. CureDuchenne Cares aims to raise the standard of care and quality of life for children and young adults living with Duchenne muscular dystrophy. For more information and resources, go to www.CureDuchenneCares.org.
CureDuchenne Cares 2017 presenting sponsors are Sarepta Therapeutics and Marathon Pharmaceuticals. Other CureDuchenne Cares sponsors include PTC Therapeutics, Pfizer Inc and Bamboo Therapeutics, Santhera Pharmaceuticals, and Invitae.