CureDuchenne Cares Hosts Inaugural Family Summit This October

~ Daylong Event Focuses on Care and Management for Duchenne
Families ~

NEWPORT BEACH, Calif.–(BUSINESS WIRE)–#Care–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.

Contacts

CureDuchenne
Karen Harley, 949-872-2552