CureDuchenne Cares, a community-based program providing educational and outreach workshops for parents and others caring for people with Duchenne muscular dystrophy (DMD), has just announced its planned events for 2017.
CureDuchenne, the non-profit DMD research support organization, pioneered the Cares program to address a perceived urgent need to educate DMD families and caregivers on the disease’s causes and appropriate care.
Services available include advanced training to physical therapists through the group’s Certified Physical Therapist program. This year, a physical therapy continuing education workshop will take place on Jan. 27 in Dallas; its cost is $165.
“Physical therapy continues to be one of the primary treatment options for those with Duchenne,” Celeste Graham, PT, director of physical therapy at CureDuchenne, said in a press release. “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 will also host its first family workshop in Dallas on Jan. 28, at no cost to attendees. Eric Olson, a researcher from U.T. Southwestern Medical Center Department of Molecular Biology will be a guest speaker, and discuss gene editing and CRISPR research (a genome editing tool). The workshop will include information on physical therapy, medical equipment demonstrations, and research updates.
Among the CureDuchenne Cares activities planned at locations across the U.S. in 2007:
- Continuing education courses for physical therapists. A workshop is set for Phoenix on Feb. 24 (again, $165); for Milwaukee, Wisconsin, in April; for Los Angeles in May; one in Birmingham, Alabama, and another in Philadelphia in September; and for Indianapolis, Indiana, in October.
- Family and caregiver workshops, all free, will take place in Phoenix on Feb. 25; in San Diego on April 8. Others are planned for Milwaukee, Wisconsin, in April; in Birmingham, Alabama, and Philadelphia in September; and in Indianapolis, Indiana, and Toronto, Canada, in October.
- Family summits are set for Atlanta on March 25; Anaheim, California, in May; Austin, Texas, in June; and in Northern California in November.
Further details will be announced closer to the events.
CureDuchenne Cares educational program focuses on best practices for Duchenne management, stretching, equipment, and orthopedics, and on adapting these to various disease stages. It also informs families on research developments, including status and participation in clinical trials.