Attention CMD/LGMD Community Members:
If you or your loved ones have been exposed to COVID-19 and are experiencing symptoms, please reach out to us at firstname.lastname@example.org. We have expert clinicians standing by to assist with guidance and recommendations for your local care team.
March 10, 2021 Update:
Statement on COVID-19 Vaccines for Future Gene Therapy Candidates
The vaccines made by Moderna and Pfizer/BioNTech are mRNA-based vaccines, based off of the spike protein of COVID-19. The vaccine made by Johnson and Johnson uses an adenovirus vector (Ad26), and the vaccine made by Oxford/AstraZeneca uses a chimp adenovirus (ChAdOx1) vector. Some news articles have incorrectly abbreviated adenovirus as AAV, but none of the approved vaccines are based on adeno-associated viruses (AAVs), and thus they do not result in producing antibodies against AAVs.There remains the potential for AAV-based vaccines to be developed for COVID-19 in the future, and if and when such AAV-based vaccines become available – their use in individuals who may be candidates for AAV-based gene therapy may be contraindicated.
February 26, 2021 Update:
Treat-NMD Statement on COVID-19 Vaccinations
December 22, 2020 Update:
World Muscle Society Advice: Vaccines
December 15, 2020 Update:
The Food and Drug Administration has issued emergency use authorization for the Pfizer-BioNTech vaccine to be administered in the United States. Because supply is limited, federal and state health departments have prioritized vaccine access to health care workers and residents of long-term care facilities as supply comes in. More vaccine supply will arrive over the coming weeks.
COVID-19 and People with Neuromuscular Disorders
Cure CMD COVID-19 Airway Clearance Guidance for Families and Clinicians
Should you suspect exposure to COVID-19, please share this document with your care team
Cure CMD COVID-19 Emergency Preparedness Planning Guide
The best time to plan for an emergency is before it happens. Review this guidance and make your plan.
Care Recommendations for Home‑Based Ventilation
As COVID-19 continues to affect our daily lives, it’s critical that we try to limit the spread of the virus as much as possible. This is especially applicable for patients who use noninvasive positive-pressure ventilation (NIPPV), mechanical airway clearance devices, or are supported by home ventilation for other chronic respiratory failure syndromes.
Print resources to review and share with friends and family covering the most important facts you need to know about COVID-19.
Dr. Oscar H. Mayer Discusses COVID-19 and Neuromuscular Disorders
Hosted by the RYR1 Foundation. Dr. Oscar H.Mayer is a pulmonologist and expert in neuromuscular respiratory care. Note: While this informational webinar was created for the RYR1 community, the advice shared is applicable to all persons with neuromuscular conditions.
COVID-19 Resources for the Muscular Dystrophy Community
Includes an advocacy template and emergency preparedness checklist
Self-Isolation (be aware of professional caregivers' potential risk for exposure)
Frequent Hand Washing
Frequent Surface Disinfecting (don't forget doorknobs, drawer handles, light switches, mobile devices and keyboards!)
Cleaning & Disinfecting Recommendations from the CDC
To make a disinfectant solution, the CDC recommends mixing 4 teaspoons bleach per quart of water.
Keep in mind that exposure to light and the age of a disinfectant solution can reduce its effectiveness. Mix what you need for one cleaning session only, and mix more when you next clean.
A. Reghan Foley, MD
Senior Research Physician
Neuromuscular and Neurogentic Disorders of Childhood Section
National Institute of Neurological Disorders and Stroke
National Institutes of Health