Commentary
Video
Helping to Expand Global Care for the Duchenne Muscular Dystrophy Patient Community: Debra Miller
The chief executive officer and founder at CureDuchenne discussed efforts to bring specialized physical therapy and infrastructure support to underserved regions to improve care for patients impacted by Duchenne worldwide. [WATCH TIME: 5 minutes]
WATCH TIME: 5 minutes
"We're very hopeful that by going to underserved countries and communities, we're going to be able to give them care, but [also] give them hope."
Since there is currently no cure for Duchenne muscular dystrophy (DMD), a severe and progressive neuromuscular disease, having comprehensive multidisciplinary care will be important for patients as prior recent studies have shown that this approach has improved life expectancy. To celebrate World Duchenne Day, held September 7, 2024, CureDuchenne launched new global initiatives in efforts to continue to increase awareness of disease that has impacted an estimated 300,000 patients worldwide.1
CureDuchenne’s International Outreach Program provides informative training, awareness, and resources to healthcare providers, helping to address the gaps in diagnosing and treating Duchenne to enhance patients' quality of life. After assessing underserved areas for access to education, healthcare, and medical equipment, the organization hosts global events which offer high-level educational programs for clinics and allied health professionals. The program has trained professionals in countries like India, Nepal, Canada, Italy, Russia, England, South Africa, Hungary, Australia, and Ukraine.
Recently, Debra Miller, the chief executive officer and founder of CureDuchenne (which was started 21 years ago after her son was diagnosed with DMD), sat down with NeurologyLive® in an interview to discuss the potential impact of the newly launched global initiatives on improving care standards for DMD. She also shared some insight on the challenges faced in different regions globally when it comes to diagnosing and treating Duchenne, and how CureDuchenne’s recent efforts are helping to address these. Furthermore, Miller spoke about the role of social media and community engagement in the fight for a cure in DMD, especially for World Duchenne Day.
REFERENCES
1. CureDuchenne Expands Global Initiatives and Spreads Awareness for World Duchenne Day 2024. News Release. CureDuchenne. Published August 20, 2024. Accessed September 6, 2024. https://cureduchenne.org/press-release/cureduchenne-expands-global-initiatives-and-spreads-awareness-for-world-duchenne-day-2024/
