Showing Nepal’s Duchenne Community our Southern California Hospitality
To turn away from any member of the global Duchenne community would be to turn away from our own here at home. That’s why we at CureDuchenne, the non-profit that’s dedicated to finding a cure, seek out and support Duchenne communities around the world. We are honored to provide much needed support for those with Duchenne in Nepal where last year’s devastating earthquake made already harsh conditions drastically worse.
Being the CEO of CureDuchenne and a mother of an 18-year-old young man who has Duchenne, I feel for mothers around the world and understand the impact this can have at home. I see my son in the boys in Nepal and I consider them as much a part of our Duchenne family as much as any of our boys in California.
We at CureDuchenne are joining forces with The Muscular Dystrophy Organization Nepal (MDON), a proactive group motivated to treat patients with muscular dystrophy while simultaneously engaging families in Nepal about the deadly disease. The CureDuchenne family is very thankful for their commitment.
It’s important that CureDuchenne teams up with MDON to provide better standards of care, which is why we’ll be supporting a care facility that will offer live-in treatment for those with advancing symptoms. In addition to shelter, this facility will provide physical therapist visits. Also, our support will enable MDON to provide in-home care for additional boys.
“I grew up with muscular dystrophy and I can personally say the situation in Nepal is not good,” MDON founder Nirmal Khadka said during a video shoot. “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 the video to see how Nirmal, who battles muscular dystrophy, is helping boys with Duchenne in Nepal.
Nepal receives minimal help and expenses are costly. The people of Nepal already live on very little and are isolated by poor roads and lengthy traveling. Supporting the whole Duchenne family begins with improving lives of those who struggle more than ourselves. Uniting together to create care for the global Duchenne community can make a significant difference in improving patient health and can lengthen the overall life of someone we normally don’t see every day such as a child with Duchenne in Nepal.
To donate go to www.CureDuchenne.org/Nepal.