Daylong Event Focuses on Care and Management for Duchenne Families
NEWPORT BEACH, CA. October 4, 2016 – The inaugural CureDuchenne Cares Family Summit, a complimentary educational seminar for families who have loved ones with Duchenne muscular dystrophy, will take place on Saturday, October 22 at the Hyatt Regency in Garden Grove, California.
The free of charge, day-long event is hosted by CureDuchenne, a national nonprofit that is working to find a cure for Duchenne muscular dystrophy, a lethal genetic disease that causes muscle degeneration. Prestigious doctors from the fields of neurology, orthopedics, and pulmonology and other guest speakers will present during the Family Summit including:
- Dr. Ramos-Platt and Dr. Robert Kay from Children’s Hospital Los Angeles (neurology and orthopedics)
- Dr. Michael Rovzar from the Paloma Medical Group (pulmonology)
- Dr. Mike Kelly, CureDuchenne Scientific Advisor (research and clinical trials)
- Karen Owens, PT, Co-Owner of SKY Pediatric Therapy and Owner of Work-Able Home (home modifications)
- Anne Edwardson, OT, California Children Services in San Diego County (adaptive driving)
- Kelli May, M.Ed, Student and Education Leadership (school advocacy)
- Kevin Philips, ATP/SMS Mobility Professionals – Seating and mobility specialist (mobility devices)
- Laurie Miller, Social Work at Children’s Hospital Los Angeles (family resources and transitions)
In the afternoon, Family Summit attendees will be able to choose topic sessions toward issues with boys of all ages. These topics include steroids for younger children, pulmonology for older boys, school advocacy, adaptive driving and transitioning to adulthood.
“When our son Hawken was diagnosed with Duchenne, there were few educational resources and little support available, and we felt so alone. Knowledge is an empowering tool for living with the challenges of Duchenne,” explains Debra Miller, Founder and CEO of CureDuchenne. “We developed the first-ever CureDuchenne Cares Family Summit as an opportunity for Duchenne families to connect and engage with other families.”
The theme of this year’s CureDuchenne Cares Family Summit is “Learn, Engage, Empower.” At the Family Summit, guests will learn the latest insights in caring for a loved one with Duchenne, engage with other Duchenne family members, and empower others to get involved in CureDuchenne to find a cure for this disease.
The CureDuchenne Cares Family Summit encourages families to learn, engage, and empower themselves — and one another. Families are encouraged to bring their children who will experience a variety of interactive activities throughout the day and have an opportunity to meet other children their age who live with Duchenne. Space is limited and registrations are being accepted online. For more information and resources, go to www.CureDuchenneCares.org.
The CureDuchenne Cares Family Summit is sponsored by PTC Therapeutics and SITE SoCal.
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 children and young adults worldwide. With support from CureDuchenne, nine research projects have advanced to human clinical trials. CureDuchenne also brings physical therapy and standard of care to local communities around the country through its CureDuchenne Cares program. For more information, please visit CureDuchenne.org and follow us on Facebook, Twitter, Instagram and YouTube.