CureDuchenne firmly believes in working together to help any child with Duchenne muscular dystrophy find the support they need. Duchenne is a disorder which knows no cultural, economic, or social boundaries. This fatal genetic muscle disease affects more than 300,000 children worldwide. Especially affected are muscular dystrophy patients in Nepal, as the region lacks resources and has endured many tragedies, including a devastating earthquake killing and injuring tens of thousands in 2015.
CureDuchenne partnered with The Muscular Dystrophy Organization Nepal (MDON) to teach families to better manage the disease and its progressive symptoms, while helping those with Duchenne to improve their education and life skills.
Watch this video about the initiative and see the condition before CureDuchenne’s support.
“CureDuchenne’s support has helped me run a central home for those with muscular dystrophy as well as provide home based services to patients,” said, Nirmal Khadka, founder of Muscular Dystrophy Organization Nepal. “Thanks to CureDuchenne’s support these boys’ care has improved dramatically. They are now getting regular physiotherapy services. The wheelchairs have made a big impact on patients, their parents and their daily life. The boys can now interact with other patients, make friends and learn life skills. We are grateful to you for helping our boys in Nepal.”
Together, CureDuchenne continues to work with MDON to provide better standards of care by supporting a care facility which offers live-in treatment for those with advancing symptoms including physician and physical therapist visits. The center can accommodate five patients in house and ten from surrounding areas. Additionally, this center provides services for families and patients, including: care, therapy, medicine, caregivers, food, transportation, equipment, education materials and programs.
CureDuchenne has provided support for the following:
- Wheelchairs were distributed to all the patients living at the center. These boys had to previously be carried, as access to wheelchairs wasn’t available.
- Coordinated group trips where boys and their families were given the opportunity to meet other families also impacted by Muscular Dystrophy.
- A Nebulizer machine and medication for 6-month use to assist with respiratory issues.
- Art supplies for coloring and painting. The boys sell their paintings to raise additional funds for the center
- School supplies, as the boys in the center have daily study time.
- Constructed a toilet for the center.
- Medical checkups, including lab work, for all boys living on site.
- Supported maintenance and upkeep of center to ensure up to five patients could remain living on site. This includes: rent, electricity, staff wages, food and other expenses.
- Continued support of physical therapy and home based therapy services including a remote physical therapy training session to demonstrate proper physical therapy for Duchenne patients.
Click here for photos.
To donate go to www.CureDuchenne.org/Nepal.
CureDuchenne is the leading nonprofit focused on funding research to find a cure for Duchenne muscular dystrophy, a disease that affects more than 300,000 boys worldwide. CureDuchenne’s mission is to extend and improve the lives of those affected by Duchenne. With support from CureDuchenne, nine research projects have advanced to human clinical trials. CureDuchenne provides the Duchenne community with resources on the best standard of care through its CureDuchenne Cares program. For more information, please visit CureDuchenne.org and follow us on Facebook, Twitter, Instagram and YouTube.