• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
  • Email
  • Facebook
  • Twitter

International Alliance of ALS/MND Associations

  • Members’ Login
  • Contact
  • Join
  • Donate
  • What is ALS/MND?
  • Events
    • Alliance Meeting 2021
    • Allied Professionals Forum 2021
    • ALS/MND Connect 2020
    • International Symposium on ALS/MND 2020
    • Awards
    • Webinars
  • March of Faces
  • Find an Association
  • Support for Members
    • Partnership Programme
    • Mentorship Programme
    • Alliance Support Grant
  • Advocacy
    • Advocacy Toolkit
    • Rights of People with ALS/MND
    • Biogen – Tofersen
    • BrainStorm Cell Therapeutics – NurOwn
    • Collaborative Medicinal Development – CuATSM
    • Cytokinetics – Reldasemtiv
    • Right to Try
    • Unproven (Off-Label) Treatments
    • US FDA Orphan Drug Designation
    • T Regulatory Cell Therapies
    • Amylyx – AMX0035
    • Kadimastem – AstroRx
  • Global Day
  • Resources
    • Submit a Resource
  • Newsletters
  • About
    • About the Alliance
    • Newsletter subscription
    • Board of Directors
    • Committees/Advisory Councils
      • Scientific Advisory Council
      • PALS and CALS Advisory Council
      • Innovation and Technology Council
      • Governance Committee
      • Budget and Finance Committee
    • Staff
    • History

Click here for Coronavirus (COVID-19) updates

Alliance Updates on COVID-19


COVID-19 Round Table : Impact on PALS & CALS

On Wednesday, April 22nd  the PALS & CALS Advisory Council (PCAC) of the International Alliance met for a roundtable discussion on the impacts of COVID-19 in our global ALS/MND community.

http://www.alsmndalliance.org/wp-content/uploads/2020/05/2020-04-22-11.04-Webinar.mp4

Click on the image below for questions and answers from this roundtable.


Update: March 29, 2020


 

Update: March 27, 2020

Dear Alliance Members and Friends,

There is no doubt that the COVID-19 situation is worrisome for the ALS/MND population and I wanted to provide some information that we have collated from various member organizations throughout the world. The COVID-19 pandemic is an evolving situation and we will continue to monitor it and as we gather more information, we will update you.

The Alliance would recommend that you discuss any individual concerns you may have with your local health and social care team. They will be able to give you advice and information which takes into account your specific circumstances, the surrounding environment and local eco-system challenges.

Individuals with ALS/MND are in a vulnerable group and are at a higher risk for complications from COVID-19. You need to self-isolate at home during the outbreak. It is very important that you try to avoid the infection. To mitigate this risk:

  • Stay home except to get medical care.
  • Wash your hands regularly with warm soap and water for 20 to 30 seconds.
  • Clean all surfaces regularly that you touch every day including your phone, joystick and wheelchair armrests, tray, push rims, etc.
  • Keep 30 days of medical supplies and medication on hand as well as nutritional supplements (including tube feeding supplies).

 Clinics/Hospitals:

Most clinics have switched to alternative communication through some form of telehealth. If you have any concerns about attending a pre-booked surgery, hospital or hospice appointment, contact the relevant professional by telephone or email to ask for guidance. If non-urgent, it might be possible to postpone the appointment to help you maintain self-isolation or to take the visit using an online platform such as Zoom, Facetime, Skype or phone.

Sheltering in place:

People are limiting social interaction at the moment and this is even more important for people living with ALS/MND. Follow your government’s recommendations and limit personal contact to those who live in the same household or those who are essential to your care.

People who do need to be in close contact with you should also self-isolate as much as possible, and follow guidance to reduce risk of bringing infection into your home. However, they may need to help you with shopping and picking up medical supplies.

Caregivers:

Continue to provide support as long as you:

  • are free of the virus symptoms, including fever, unexpected and persistent coughing, and feeling short of breath
  • have not been in recent close contact with anyone who has the symptoms.

If you do have symptoms, you must self-isolate for 14 days away from the person at high risk. If you do not live with them, this means not entering their home during this time. If you live in the same household, try to isolate in a different room as much as possible.

Alternative care may need to be arranged if you become unable to offer support, especially if the person with ALS/MND is unable to manage daily routines without your help. Try the following:

  • contact the care agency if you receive some help from a paid care worker, as it may be possible to increase the amount of care
  • contact the local ALS/MND Organization for the person you support
  • contact the person’s local health and social care agencies
  • Discuss ahead of time with your home care manager or agency how home health aides are screened and what backup will be provided for unwell workers.
  • Call attendants/home health aides before they come to your home to ensure they have not travelled to an affected area in the last 14 days and that they do not have a fever, cough or breathing difficulties.

When supporting someone at high risk, take extra care with hygiene. It is particularly important to consider hygiene before and after supporting someone with ALS/MND to eat and drink. Also, when assisting them with moving and handling from one location to another. The guidelines to Social Distancing provided by the government in England are a good source of information:
https://www.gov.uk/government/publications/COVID-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults

A guide for family caregivers and COVID-19 precautions caregivers need to take now that is useful can be found here: https://ontariocaregiver.ca/family-caregivers-and-COVID-19-precautions-caregivers-need-to-take-now/

Symptoms:

If you think you are showing symptoms of COVID-19, check the website of or call your local public health
authority for advice. Call the clinic (primary care or ALS/MND clinic) that you usually attend to let them know you are unwell and have other health concerns.

Oxygen:

Prolonged use of oxygen therapy can be risky with ALS/MND. It can cause an upset in the balance between oxygen and carbon dioxide in your blood stream. However, there may be situations where oxygen can be used for short amounts of time to bring levels up. This should be done with the knowledge of your care team, who understand your needs.

If you do need emergency help, print off a warning that you have ALS/MND to let medical staff know that oxygen may need to be used with caution.

Ventilation:

If you use a ventilator, non-invasive ventilation like BiPAP, or cough assist device speak to your health care provider or respiratory therapist about the precautions you, your family and attendants should take in your home. Clean your equipment and replace filters regularly as per your device manual. Ensure you have an adequate supply of filters and tubing. The Les Turner Foundation has published a resource specifically about respiratory issues and you can access it here https://lesturnerals.org/support-services/coronavirus/care-recommendations-for-respiratory-issues/

Mental Health:

Social and physical isolation is very challenging from a mental health point of view. There are online resources to help with that as well and one link is from CAMH https://www.camh.ca/en/health-info/mental-health-and-COVID-19

Resources:

For further information about COVID-19 and the global situation we recommend that you seek advice only from credible sources such as the World Health Organization https://www.who.int/emergencies/diseases/novel-coronavirus-2019 , and your national, state and local health authorities.

This guidance was created by collating resources globally and we can’t guarantee that the guidance is up to date or current as the pandemic is changing daily. We highly recommend that you communicate regularly with your local clinic, health authority and ALS/MND Society or Association.

Stay safe,

Calaneet Balas, Chair
International Alliance of ALS/MND Associations

Primary Sidebar

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Ailsa Malcolm-Hutton, Diagnosed 2013 - MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013 – MND Association of England, Wales and N Ireland

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

  • David Watson, MND Scotland, Diagnosed 2018, Scotland

    David Watson, MND Scotland, Diagnosed 2018, Scotland

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • Margreth Burger-Saile, Diagnosed 2011 - ALS Schweiz, Switzerland

    Margreth Burger-Saile, Diagnosed 2011 – ALS Schweiz, Switzerland

  • Charlie “Hark” Dourney, Diagnosed 2007 - Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 – Hark ALS, USA

  • Susan Anderson, Diagnosed 2014 - Hope Loves Company, USA

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

  • Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014, Canada

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014, Canada

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

  • Marcel R. Wernard, Diagnosed 2016 - ALS Patients Connected, The Netherlands

    Marcel R. Wernard, Diagnosed 2016 – ALS Patients Connected, The Netherlands

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Erwin Coppejans, Diagnosed 2007 - ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Danny Reviers, Diagnosed 1979 - ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

  • Orlando Ruiz, Diagnosed 2001 - ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001 – ACELA, Colombia

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

  • Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

    Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

  • Osiel Mendoza, Diagnosed 2016 - ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 – ALS Therapy Development Institute, USA

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Josée Kolijn-de Man, Diagnosed 2015 - ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 – ALS Patients Connected, The Netherlands

  • Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

    Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

  • Ian Roberts

    Ian Roberts

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

Learn more about the March of Faces

Allied Professionals Forum Registration

The International Alliance of ALS/MND Associations will host a virtual Allied Professionals Forum spread over two days to accommodate time zones on 3 – 4 December 2020.
Click here to register for the Allied Professionals Forum

Footer

Support the Alliance

Please donate Please consider making a donation to support our work. Thank you!

Latest Tweets

  • An earlier tune by @RoyTaylor10 "Watch Your Back MND" https://t.co/Q4AsjcAEvR We see you there too… https://t.co/9Bcb9E9Dj9 January 17, 2021 4:24 pm
  • Congratulations! https://t.co/r2lwGwEKWC January 6, 2021 1:31 am
  • Excited to learn that @biogen has completed enrollment of the VALOR trial for SOD1 ALS. #ALSMNDWithoutBorders January 4, 2021 6:08 pm

Keep in touch

Sign up to receive updates and to hear what's going on in the International Alliance of ALS/MND Associations.

Return to top of page
  • Disclaimer
  • Privacy notice & Cookies
  • Sitemap

Copyright © 2021 The International Alliance of ALS/MND Associations. All rights reserved.

Registered in England: Charity Number 1079504 · Site built by graphics.coop · Powered by WordPress · Members' login