Devastating Disease Bridges Borders Between Duchenne Community in California and Nepal
October 17, 2015
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.
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.
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