Devastating Disease Bridges Borders Between Duchenne Community in California and Nepal

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Orange County Duchenne Muscular Dystrophy Nonprofit Reaches Out to
Help Boys in Nepal

NEWPORT BEACH, Calif.–(BUSINESS WIRE)–Whether you live in the paradise of Southern California or the cold
mountains of Nepal, the physical and emotional challenges of Duchenne
muscular dystrophy are the same. This lethal genetic disease causes
muscle deterioration that reduces mobility and motor function as
patients get older, and claims their lives by their mid-20s. The
community of people who battle this disease are united in their effort
to care for all patients, and now CureDuchenne,
the non-profit dedicated to finding a cure, is reaching across the miles
to provide much-needed support for those with Duchenne in Nepal where
harsh conditions were made worse by the devastating earthquake earlier
this year.

“Every boy with Duchenne muscular dystrophy is a member of our family,
and we will continue to reach farther to support our Duchenne family
members,” said Debra Miller, founder and CEO of CureDuchenne, whose
18-year-old son Hawken has Duchenne.

The Muscular
Dystrophy Organization Nepal
(MDON) has been teaching families to
better manage the disease and its progressive symptoms while helping
those with Duchenne to improve their education and life skills.
CureDuchenne is teaming up with MDON to provide better standards of care
by supporting a care facility that will offer live-in treatment for
those with advancing symptoms including physician and physical therapist
visits. Additionally, with help from CureDuchenne, MDON will be able to
provide in-home care for additional boys. CureDuchenne has been working
with MDON during the past year.

“I have muscular dystrophy and the situation is not good in Nepal,” said
Nirmal Khadka, founder of MDON. “There is no proper care. CureDuchenne’s
support will provide hope for those with Duchenne. We will be able to
provide better quality of life for the boys thanks to CureDuchenne.”

Watch this video
to see how Nirmal, who battles muscular dystrophy himself, is helping
boys with Duchenne in Nepal.

“Care is costly in Nepal where people already live on very little and
are isolated by poor roads and distance,” added Miller. “Offering
support to the whole family begins with improving life coping skills
which in turn improves patient care and the quality of life of someone
with Duchenne in Nepal.”

11 year-old Tyler Armstrong, who has embarked on a journey to climb
the seven summits for those with Duchenne muscular dystrophy, will get
to meet these boys in person when he arrives in Nepal next spring on his
way to climbing Mt. Everest. Tyler is raising money to help find a cure
for Duchenne.

To donate go to www.CureDuchenne.org/Nepal.

About CureDuchenne

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 boys worldwide. With support from CureDuchenne three
pharmaceutical treatments could be approved by the FDA within the next
year. These treatments may lessen the effects of the disease for those
with certain mutations of Duchenne, but there is still much to be done
to find a cure. For more information, please visit CureDuchenne.org
and follow us on Facebook,
Twitter
and YouTube.

Contacts

CureDuchenne
Karen Harley, 949-872-2552
Karen@CureDuchenne.org