Over the past year and a half, we hope that you have found this page to be a helpful resource as you navigated the COVID-19 pandemic. As we seek to come out the other side and begin to re-engage with our family, friends, and communities, know that Cure SMA’s work for the SMA community continues. Please continue to stay safe and we’re here if you have questions. Just reach out via email at [email protected].
Cure SMA Community Webinar Recordings
- Wednesday, July 21, 2021
- Friday, January 29, 2021
- Thursday, October 29, 2020
- Friday, July 31, 2020 (PowerPoint only)
- Thursday, May 28, 2020
- Friday, March 27, 2020
Cure SMA FAQ Responses
- UPDATED! Answering Questions about COVID-19 Vaccination and SMA (last updated July 2021)
- Answers to Your Coronavirus (COVID-19) Medical Questions (last updated July 2021)
Prepared & Template Letters
- Cure SMA Letter to Employers Supporting Sustained Virtual Work Environment
- CDC School Attendance Decision Making Tool
- Cure SMA Letter to Support Continued Use of In-Home Healthcare Workers
Community Resources
- Federal Guidance Around Vaccine Access for People with Disabilities
- State Prioritization of Disability Community in COVID-19 Vaccine Distribution – Johns Hopkins University
- Cure SMA Suggested Resources and Tools for Staying Safe at Home
- Care Recommendations for Home‑Based Ventilation Patients
- Door Sign to Alert Visitors and Mail/Package Carriers of Vulnerable Person In the Home
Healthcare Professional Resources
- Article in NeurologyLive, title “SMA and COVID-19: Guidance and Resources for Providers”
- Resources for Managing COVID-19 with Your Patients or In Your Practice
- Article in Muscle & Nerve, titled “SMA Care in the COVID-19 Pandemic Era”
Cure SMA Policy Actions in Support of SMA Community
- 03/22/21: Cure SMA Urges State Medicaid Agencies to Expand Community Service for SMA Community
- 03/03/21: Cure SMA Urges Senate to Support Final Action on Medicaid Home and Community-Based Services Program
- 02/02/21: Cure SMA Joins Others in Seeking Medicaid Home and Community Services in Next COVID-19 Package
- 01/26/21: Cure SMA Asks the Biden Administration for Immediate COVID-19 Vaccine Availability for SMA Community
- 12/16/20: Cure SMA/Other Rare Disease Organizations Ask States to Provide Priority Access to COVID-19 Vaccine
- 10/23/20: Cure SMA/Other National Organizations Seek Protections for People with Disabilities in Vaccine Allocation
- 09/25/20: Cure SMA Letters to State Governors Regarding COVID-19 Vaccination for SMA Community
- 08/25/20: Cure SMA Seeks Priority Access for COVID-19 Vaccines for SMA Community
- 04/15/20: Cure SMA COVID-19 Survey Update Letter to Congress on SMA Needs and Requests
- 03/31/20: Action Alert: Help Educate Congress on the Needs of the SMA Community during the COVID-19 Emergency
- 03/26/20: Cure SMA Letters to State Governors Regarding Emergency Policies for SMA Community
- 03/24/20: Cure SMA Letters to State Medicaid Directors Regarding Support for SMA Community
- 03/24/20: Cure SMA Signs on to Letter Supporting Transportation Access Amid COVID-19 Crisis
- 03/20/20: Cure SMA Signs on to Letter Supporting Access to Medication Amid COVID-19 Crisis
- 03/20/20: Cure SMA Letter on Educational Needs of Children with SMA Amid COVID-19 Crisis
- 04/27/20 Update: U.S. Department of Education Waiver Report to Congress
- 03/18/20: Cure SMA Letter in Support of “Coronavirus Relief for Seniors and People with Disabilities Act”
Virus and Prevention Information
About COVID-19:
- The coronavirus that causes COVID-19 spreads easily and sustainably between people. It spreads more efficiently than influenza, but not as efficiently as measles, which is highly contagious.
- The virus is spread by respiratory droplets produced when an infected person coughs or sneezes. These droplets can land in the eyes, noses, or mouths of people who are nearby, or even be inhaled into the lungs, or by touching eyes, nose or mouth with hands that have the virus on them.
- People are thought to be most contagious when they have symptoms but can be contagious early in course of illness. People may have the infection and not have symptoms and can spread the infection.
- The elderly and adults with underlying health conditions are at increased risk for severe disease. Children seem to present with milder disease, but children have also been hospitalized with COVID-19.
- Typical symptoms may appear 2 to 14 days after exposure, presenting as fever, cough, and shortness of breath, chills, repeated shaking with chills, muscle pain, headache, sore throat and sudden new loss of smell and taste.
- The best way to prevent illness is to avoid being exposed to this virus.
Protecting Yourself and Your Family:
- Concern about COVID-19 can lead to fear and anxiety. Health professionals, and we at Cure SMA, are here to help alleviate these fears.
- Get the COVID-19 vaccine. Three vaccines are available and approved by the U.S. Food and Drug Administration (FDA) for Emergency Use Authorization. Children between 12 and 18 years of age can receive the Pfizer COVID-19 vaccine.
- Wear a mask that covers your nose and mouth to help protect yourself and others.
- Stay 6 feet apart.
- Avoid crowds. If gathering with others choose to meet outdoors.
- Avoid others who are sick.
- Frequently wash hands with soap and water for at least 20 seconds or use alcohol-based hand sanitizer with at least 60% alcohol base.
- Cover coughs and sneezes with tissue, throw away the tissue and wash hands.
- Disinfect frequently touched surfaces regularly.
- If you become ill, stay home and call your doctor’s office to discuss symptoms.
- Use disinfectants to clean surfaces only.