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COVID-19 Recommendations and Resources for the ALS Community

March 13, 2020  -  Aditi Narayan Minkoff

If you or someone you know has ALS and is currently experiencing symptoms of COVID-19, please contact your healthcare provider immediately. 

With the recent assignation of COVID-19 as a pandemic by the World Health Organization, we are 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 is currently no evidence to show 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 tele-visit. You may also find the Les Turner ALS Foundation’s care recommendations for respiratory issues helpful.

Information Related to Clinical Trials:

If you are 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 are 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 is 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 have compiled a list of resources that are providing assistance to families with ALS who are affected by COVID-19. 

Financial Assistance & Volunteer Support:

  • The Healthwell Foundation is offering a small grant to help people cover costs related to COVID-19 such as delivery of food, medications, transportation and telehealth visits. Check out the eligibility details here and call (800) 675-8416 to apply over the phone.
  • The National Organization for Rare Disorders is providing financial assistance to support patients with critical non-medical needs due to COVID-19. Email [email protected] or call 203.242.0497 to learn more and apply.
  • The Susie Foundation in Connecticut has introduced a Good Neighbors program that will connect families affected by ALS with volunteers who will run 1-2 critical errands for them per week. They are also repurposing their Flex Grant program to provide emergency funding to families who are struggling with unexpected expenses due to the spread of COVID-19. Learn more about their programs and how to apply here
  • The Les Turner ALS Foundation in the Chicagoland area is providing emergency relief funding. Learn more here
  • The LiveLikeLou Foundation matches registered ALS families across North America with individual volunteers from the Phi Delta Theta Fraternity for occasional arms-and-legs outdoor support in a manner that protects everyone from unnecessary exposure to illness or other risks. Learn more by watching this brief video and register here.

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:

  • The House Committee on Veterans’ Affairs has helpful information on COVID-19 resources for veterans with ALS here.

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 will be hosting 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. Learn more and register here
  • 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 here 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. Update 1 here and update 2 here.

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 here and how to make your own mask here. 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 will include it once vetted.

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