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The Coronavirus and Our Chapter 

Coronavirus and Our ALS Community

The ALS Association St. Louis Regional Chapter understands that many of those we serve—people with ALS, their families and supporters—may have questions and concerns related to the spread of the Coronavirus, known as COVID-19. We are closely monitoring national government health agency guidance on taking measures to ensure everyone’s protection during this time. Our highest priority is the safety and well-being of people with ALS, their families and caregivers, and our staff. We have made minor temporary changes to programs and services until further notice. See updated details about our Chapters response during COVID-19 below. Now more than ever, fundraising and donations are essential to continue our ongoing programs and services. We continue to evaluate the scheduling of upcoming St. Louis Regional Chapter events. We will provide updates on any event changes as soon as we are able.

Information About COVID-19 Vaccines in Our Region

There is much interest within the ALS community as well as the general public about the COVID-19 vaccine and information about how to get vaccinated. The following information is intended as a resource to find more information about where the vaccine may be available as well as information about how to register to for a vaccination appointment. Please note that availability for individuals in the various phases/tiers as defined by the states of Missouri and Illinois varies by region and/or provider.

Depending on where you live there may be multiple ways to pre-register for a vaccination appointment. While pre-registering with more than one entity is fine, in order to allow as many people as possible to receive the vaccine quickly please do not register for an actual vaccination appointment more than once. As always, please consult with your physician or physician’s office with questions about the COVID-19 vaccine, and as always please contact your ALS Care Services Coordinator with any questions or concerns.

State of Missouri COVID-19 Vaccine Information:

List of Missouri Local Public Health Agencies:

State of Illinois COVID-19 Vaccine Information:

List of Illinois Local Public Health Agencies:

If you are a veteran you can sign up to receive updates about getting the vaccine through the VA:

In the Greater St. Louis area, many of the large healthcare providers have COVID-19 Vaccine pages where you can pre-register for the vaccine:

The National ALS Association has also created a COVID-19 Vaccine page:

What We Are Doing about COVID-19

  • Staying Informed and Adapting to Changes – The St. Louis Regional Chapter is staying up-to-date on the ever-changing recommendations provided to people living in our service area. We are continually in conversations surrounding current recommendations and making changes to programming as needed with the goal of keeping everyone involved safe.

  • Modifying Program Strategies – We are providing remote support and utilize technology for meaningful care services interventions. Chapter staff are reaching out and connecting with the families we serve through phone, email, and video conferencing. We are working together to ensure that all people with ALS have the opportunity to be connected to Chapter services.

  • Educating and Supporting Our Team – The Chapter has created an internal fitness plan to provide clear guidance for continued and safe operations during the pandemic. We communicate frequently with all staff members to ensure that they are aware of the latest developments, prevention techniques and most importantly the needs of people with ALS.  All staff continue to work remotely but are well connected.

Care Services Updates

  • People with ALS and their families come first in everything we do. The following programmatic changes are effective immediately and will be reassessed regularly until there is no risk to the ALS community.

  • All home visits by Care Service Coordinators are suspended until further notice. We encourage those who can to schedule video calls. Your Care Service Coordinator can easily schedule this for you. All Care Service Coordinators are working remotely and are reachable by phone and/or email during regular business hours.

  • Access to telemedicine and virtual programs: Clinics are modifying clinic operations. The ALSA staff continue to work collaboratively with the clinic staff remotely and can connect people with ALS with the clinicians at their current clinic. Many clinics are offering virtual appointments so the person with ALS can continue to be followed by the neurologist while safely staying at home. We are also moving towards additional virtual support and web based opportunities to protect the safety of those we serve to educate, counsel and keeping you connected emotionally. This could be individually and/or group support to address challenges with isolation and having the virtual ability to gather. Reach out to your Care Service Coordinator if you need assistance in getting technology for virtual medical appointments with physicians or clinical team members.

  • We know that many of you are preparing to have phone and video visits with your medical providers, and may not be familiar with "how to" use one of the most common systems called Zoom for Telehealth. The ALS Association Golden West Chapter has created this helpful online resource to assist you in getting started.

  • The Durable Medical Equipment and Augmentative Speech Communication Loan Program are actively operating with limitations to meet your needs for equipment but at this time our DME partners are unable to pick-up any equipment from a person’s home. Our Chapter also has limited equipment in Chapter loan closet. We realize this may cause a hardship to people with ALS and their families, so please contact your Care Service Coordinator for specific equipment needs so we can find a resolution.

  • Addressing the most urgent financial needs: The Jane’s Angel Fund is a grant program that seeks to reduce the financial burden of ALS for those with the disease and their families. We realize that the COVID-19 epidemic may exacerbate the financial burden already felt by the disease. The program provides financial assistance for expenses that are not traditionally covered by private insurance, Medicare or Medicaid. We want to ensure that this crisis does not cause further financial harm to families living with ALS. See details here on grant guidelines and application process.

Community Outreach Updates

  • We are transforming our community outreach in-person events into virtual participation opportunities. We are continuing to evaluate all planned activities, in accordance with the CDC and local and state guidelines. We will provide updates via our website, social media channels, and directly to participants via email

How You Can Help the ALS Community

  • Keep Yourself and Others Healthy – We are promoting everyday preventive health actions and to follow to the basic prevention techniques and guidelines for higher risk communities from the CDC, which include:

    • The virus is thought to spread mainly through respiratory droplets produced when an infected person coughs or sneezes. It is a good idea to avoid close contact with people who are sick and practice social distancing, and maintain about a 6 feet spacing between yourself and other people.

    • Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing. If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60 percent alcohol. Always wash hands with soap and water if hands are visibly dirty. Avoid touching your eyes, nose, and mouth.

    • Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe. Please consider disinfecting if you receive any new durable medical equipment (DME) or any external deliveries/packages.

    • Fever, cough, and shortness of breath are the main symptoms of coronavirus. Call your health care provider if you suddenly develop any of those symptoms, or with any specific questions or concerns.

    • More information about coronavirus is detailed on the website for the CDC. There are also printable copies of helpful resources available in English, Spanish, and Chinese. You can also find helpful information in this Q & A from the World Health Organization (WHO).

  • Be Kind – We are all in this together. During stressful times people may direct their fear or anxiety towards others. By learning the facts of COVID, we can help counter any potential stigma tied to the virus. Viruses do not target specific racial or ethnic groups. We stand together as one community promoting the safety and well-being of all.

  • Get Involved – ALS is unrelenting, and so is our resolve. These current challenges underscore the need to join together in support of our ALS community. Our community outreach and fundraising activities, like our Walks to Defeat ALS, Kimmswick 5K Run, and Swing for a Cure Golf Tournament, are year-round efforts to raise awareness and generate significant and necessary revenue that bring help and hope to people living with ALS and their families. Our advocacy efforts are critical to advancing our Public Policy initiatives on behalf of the ALS community. Now more than ever, people living with ALS and their loved ones need the resources that our Chapter provides.

  • Make a Gift – COVID-19 is creating new medical and public health challenges, causing economic uncertainty, and impacting vulnerable populations, like people living with ALS and their families. The ALS Association St. Louis Regional Chapter’s response during this pandemic is in alignment with our mission and vision, but requires unexpected resources. Please help us continue to meet the needs of our ALS community. 100 percent of your donation will support people with ALS and their families impacted by COVID-19 when you donate to Jane’s Angel Fund.

New Legislation on Charitable Giving

  • Now more than ever, charities like The ALS Association St. Louis Regional Chapter are needed to the meet the needs of our communities. On December 26, 2020, Congress and the President enacted a newly revised Coronavirus Aid, Relief, and Economic Security Act (CARES Act), which provides extensive relief for individuals, businesses, medical centers and nonprofits into 2021.

    Some provisions of the CARES Act center around charitable giving and new benefits that are offered to individuals who make donations during this time. For these, key points are listed below:

    • - All taxpayers can deduct charitable contributions up to $600 for joint filers, and $300 for single filers or married couples filing individually from their 2021 taxes.

    • - The adjusted gross income has been waived, allowing itemizers to deduct contributions up to 100 percent of AGI.

    • - Qualifying C Corporations can deduct up to 25 percent of their charitable contributions.

  • If you can, we encourage you to take advantage of the provisions laid out in the CARES Act and make a gift to ensure the ALS community continues to be served through COVID-19. Please contact Natalie Pottebaum at or 314-432-7257, or your financial advisor, to learn more.

The ALS Association St. Louis Regional Chapter remains unwavering in our commitment to serve the ALS community in our region, and to our vision to create a world without ALS. We thank you for your strong support of the Chapter’s efforts. Everything that we do on behalf of people with ALS and their loved ones is made possible by people like you. If you have questions or concerns for our Chapter, please reach out to us at