COVID-19 Related ALS Resources


Print a sign for your front door to remind visitors to take added precautions

With the recent designation of COVID-19 as a pandemic by the World Health Organization, we’re sharing pertinent information with the ALS community to understand the risks and impact of SARS-CoV2. Please note that per the CDC, this is a rapidly evolving situation, and the CDC will continue to share updates daily. 

While there’s currently no evidence that patients with ALS are uniquely sensitive to the virus, individuals with respiratory health issues, chronic medical conditions such as heart disease, diabetes or lung disease, and those who are elderly may be at a higher risk for experiencing COVID-19 severely.

Prevention & management

In addition to following the CDC and Muscular Dystrophy Association’s recommendations for the prevention and management of COVID-19, we recommend asking your ALS clinic care team whether they recommend an in person or televisit. You may also find the Les Turner ALS Foundation’s care recommendations for respiratory issues helpful.

Information related to clinical trials

If you’re currently participating in a clinical trial, contact your trial care team to determine if there are any changes to protocol or timeline.

In an emergency situation

If you’re in need of assistance from an emergency medical technician (EMT), please reference this document for helpful information to provide to them and emergency room staff regarding additional precautions to take when caring for ALS patients. 

The CDC and other health professionals are learning more about COVID-19 every day. While the possibility of contracting a contagious disease is scary, it’s important to stay calm and follow recommended prevention and management strategies. Please continue to check the CDC’s website for the most up-to-date information about COVID-19 in the US. 

Approved by

Merit Cudkowicz, MD, Sean M. Healey & AMG Center for ALS

Jonathan Glass, MD, Emory ALS Center

Richard Bedlack, MD, Duke ALS Clinic

Robert Bowser, PhD, Gregory W. Fulton ALS Center

Support resources

Augie’s Quest, Team Gleason, Les Turner ALS Foundation, I AM ALS, LiveLikeLou, Hope Loves Company, The Joe Martin ALS Foundation, The Brigance Brigade Foundation and others across the ALS community are banding together to support ALS families during this time. 

We’ve compiled a list of resources and assistance for families with ALS who are affected by COVID-19.

Financial assistance & volunteer support

Equipment

  • Every 90 Minutes and Evergreen Circuits are providing ventilator filters from Philips Respironics to ALS patients who are unable to get it through a DME supplier. Click here to apply
  • Your ALS Guide is offering packs of five FDA–approved surgical masks to people living with ALS, caregivers and ALS professionals in the United States. Order your masks while supplies last!
  • Team Gleason is continuing to provide all of its services to people living with ALS, with the exception of adventures which have been suspended. Learn about how they may be able to help you and apply for assistance here
  • Acknowledging that there may be a shortage of some supplies, Respiratory Quality Services researched ways to clean your breathing device accessories. You can read them here. Be sure to consult with your respiratory therapist on these guidelines.

Veterans

Virtual engagement

  • Hope Loves Company is going virtual! Learn more about their virtual programs including a pen pal program for children, teens and adults. 
  • Team Gleason and The Center for Medicare Advocacy hosted a webinar on May 6th to help people living with ALS better understand changes to Medicare during the Public Health Emergency and how to make the best decisions about Medicare at any time. Watch/listen to the recorded webinar.
  • The Brigance Brigade Foundation (BBF) will soon launch the BBF Caregiver Club, which will be a virtual meetup of caregivers of people living with ALS (CALS). The Caregiver Club will encourage CALS to set aside time to practice self-care through guided activities such as art, journaling, meditation, and exercise. Email Amy Mullan at [email protected] to learn more and sign up! 
  • Watch and listen to ALS webinars and symposiums from Mass General including COVID-19 information and how they have reshaped the MGH clinic community to respond to the COVID-19 outbreak.
  • The Northeast ALS Consortium is hosting webinar updates on the impact of COVID-19 on ALS clinical research. Watch update 1 and update 2.

DIY home supplies

  • Check out Les Turner’s guide for making disposable cleaning wipes.
  • If you’re interested in making your own face mask, learn more about fabric options and how to make your own mask. Please note that according to the CDC, the true protective capability of homemade masks is unknown. Caution should be exercised when considering this option. Homemade masks should ideally be used in combination with a face shield that covers the entire front (that extends to the chin or below) and sides of the face.

Good news

Know of a resource to support people affected by COVID-19 that we missed? Email us at [email protected] and we’ll include it once vetted.

You are not alone. We’ve got your back every step of the way

Connect with an I AM ALS Navigator today

Have questions? Call us at 866.942.6257 between 9 a.m. - 5 p.m. or email us

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