NEWPORT BEACH, Calif., (March 24, 2020) – CureDuchenne, the leading global nonprofit focused on funding and finding a cure for Duchenne muscular dystrophy, is rolling out a comprehensive suite of online resources for the Duchenne community.
This suite of resources is aimed at engaging the community to maintain continuity of care and community building in the current times of global health uncertainty:
- Coronavirus Health Update Guide – A comprehensive website resource for families to have a centralized hub of relevant information ranging from physical therapy tips and tricks, to updates from Pharmaceutical companies on drug supplies and a Q&A portal where families can pose questions and obtain professional answers quickly.
- Professional Therapist Online Courses – The courses, led by experts in Duchenne, focus on educating therapists in the areas of diagnosis, care and disease progression. As telemedicine becomes more ubiquitous, the trained therapist will be able to use these skills to treat patients from home, and when the time allows, in clinic.
- ‘Duchenne Physical Therapy’ Facebook Group – CureDuchenne Certified Physical Therapists offer online support to families affected by Duchenne muscular dystrophy.
- ‘Duchenne Days’ Facebook Group – Families from throughout the community are coming together and sharing positive messages about how they’re spending their time at home with stories, photos and videos, along with suggestions and ideas for others to enjoy their days at home.
- Virtual CureDuchenne Cares Sessions – Focused on improving the quality of life for individuals living with Duchenne, the series of virtual sessions offers insightful and interactive presentations on standards of care, research updates, family support, physical therapy and medical equipment.
While the global coronavirus pandemic is experienced differently by everyone and most are confined to stay in their homes, the effect on individuals with Duchenne, their families and caregivers, carries greater weight due to the health complexities that Duchenne presents. Confinement requires new ways for families and caregivers to get access to resources they need and creativity to put those things at their fingertips.
“There is no better way to fight rare diseases than by building a community, and these online resources allow us to impact our community in ways we never thought possible” said Debra Miller, Founder and CEO, CureDuchenne. “Once the current health conditions surrounding coronavirus pass, our boys and young men will still be here fighting Duchenne. We are committed to being right here with them, fighting, and providing innovative ways to support what the community needs,” Miller added.
CureDuchenne is recognized as the global leader in research, patient care and innovation for improving and extending the lives of those with Duchenne muscular dystrophy. As the leading genetic killer of young boys, Duchenne affects more than 300,000 individuals living today. CureDuchenne is dedicated to finding and funding a cure for Duchenne by breaking the traditional charitable mold through an innovative venture philanthropy model that funds groundbreaking research, early diagnosis and treatment access. For more information on how to help raise awareness and funds needed for research, please visit www.cureduchenne.org.