Despite the new reality of postponed events, remote working, and social distancing, Cure SMA would like you to know that our work for the SMA community continues. Please stay safe and make sure you and your loved ones are following all recommended precautions. We’re here if you have questions, so please reach out via email at [email protected].
Cure SMA Community Webinar Recordings
- 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 2/27/21)
- Answers to Your Coronavirus (COVID-19) Medical Questions (last updated 4/27/20)
Prepared & Template Letters
- Cure SMA Letter on Vaccines for Patients to Share with Healthcare Provider or Health Official (updated 1/28/21)
- Cure SMA Letter on Treatment for Patients to Share with Healthcare Provider
- Cure SMA Letter on Treatment for Healthcare Providers to Share with Healthcare Administrators
- 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
- Cure SMA Letter Template for Outreach to State Medicaid Offices Regarding Expanded Support for People with SMA
- Federal Guidance Around Vaccine Access for People with Disabilities
- State Prioritization of Disability Community in COVID-19 Vaccine Distribution – Johns Hopkins University
- NORD Webinar: COVID-19 Vaccines Update with FDA and CDC Leaders Addressing Rare Disease Community
- Rehabilitation Services Administration’s COVID-19 Guidance on Employment Services
- Interim CDC Guidelines for High Risk Workers (see pages 49-52)
- Cure SMA Suggested Resources and Tools for Staying Safe at Home
- Care Recommendations for Home‑Based Ventilation Patients
- U.S. Department of Health and Human Services (HHS) Know Your Civil Rights and HIPAA Laws
- COVID-19 FAQs from the U.S. Department of Education
- COVID-19 FAQs for State Medicaid and Children’s Health Insurance Program (CHIP) Agencies
- 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
- 03/22/2021: 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
The SMA community’s concern has been rising as cases of COVID-19 increase in the U.S. Cure SMA would like to share some information on the disease and prevention measures for your easy reference.
What We Know:
- The coronavirus that causes COVID-19 is spreading very easily and sustainably between people. Information from the ongoing COVID-19 pandemic suggest that this virus 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.
- People are thought to be most contagious when they have symptoms but can be contagious early in course of illness. New evidence suggests that some 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.
- There is no approved treatment or vaccine for this virus.
- 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:
- Stay calm. Concern about a novel virus infection outbreak can lead to fear and anxiety. Health professionals, and we at Cure SMA, are here to help alleviate these fears.
- Stay at home as much as possible to further reduce your risk of being exposed. As possible, others in the household should also remain at home.
- 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.
- Avoid touching eyes, nose, and mouth.
- Cover coughs and sneezes with tissue, throw away the tissue and wash hands.
- Disinfect frequently touched surfaces regularly.
- Avoid crowds or large gatherings.
- If you go out in public, take precautions to keep 6 feet of space between yourself and avoid contact with others (i.e., shaking hands, touching, etc.). Also wear cloth face coverings over the mouth and nose for everyone over 2 years of age. The public should use non-medical cloth masks, while surgical masks and N95 masks/respirators should be reserved for healthcare providers.
- If you become ill, stay home and call your doctor’s office to discuss symptoms. Try to stay out of healthcare facilities.
- Use disinfectants to clean surfaces only. Do not ingest disinfectants or bleach, or use on food.