The COVID-19 Vaccine—What You Should Know

It is fair to say that there has been much enthusiasm about safe and effective vaccines for COVID-19 being developed quickly and being distributed across the country. It is also fair to say that there has been more than a little confusion about how the vaccines are being distributed, and how and when they will be available to people from various communities, including for people with ALS.

In an effort to provide the most current and reliable information available, the National Organization for Rare Disorders (NORD), in partnership with The ALS Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association, will host a special webinar with leaders from the US Food and Drug Administration (FDA) and the Centers for Disease Control (CDC) to discuss the COVID-19 vaccines with the rare disease community. The webinar is Friday, January 15, from 1 – 1:45 p.m. CT. The webinar is free, and you can register here:

On a local level, distribution of COVID-19 vaccines are being managed by county departments of public health based on guidelines determined by the States of Missouri and Illinois. Both states are currently only vaccinating people in the “Phase 1A tier,” which includes healthcare workers and long-term care facility residents and staff.

Some county health departments are allowing residents to pre-register for vaccines for when they are available for additional phases. You should consult your local county department of health website for the most current information about vaccines in your area.

Our chapter has sent letters to the governors of both Missouri and Illinois asking them to ensure that people with ALS be able to receive the earliest possible time, and on a national level the ALS Association has contacted the CDC with the same request.

The Association has also created a COVID-19 Vaccine information page on their website with more information that is updated regularly as new information or resources become available.

As always, people with ALS, their families and their caregivers should discuss with their physician any questions about the vaccine. And with the current surge of cases across the country it is more important than ever that people with ALS and their caregivers and family members follow the COVID-19 protocols recommended by the CDC: avoid crowds, stay at least six feet away from people who are not part of your household, wear a mask, and wash hands regularly.

We are all hopefully that the vaccine distribution systems becomes more streamlined in the near future, allowing everyone access to the vaccine safely and quickly. And as always, we will advocate for people with ALS to receive the care and treatment they deserve. ALS does not stop, and neither do we.

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