About our Community Leads

ALS Canada’s Community Leads are a tremendous source of support for people and families living with ALS. Some of the ways they provide assistance include helping to:

  • Navigate healthcare systems and community supports;
  • Provide information, resources, and education about ALS;
  • Offer both virtual and in-person home visits to discuss individual and family needs;
  • Support advance care planning; and
  • Liaise with healthcare providers to access the best care possible.

You must be registered with ALS Canada to receive support from a Community Lead and other ALS Canada services.

Learn more

Please note that ALS Canada Community Leads do not provide medical advice or make referrals or recommendations related to drug treatments or alternative treatments.

These questions should be discussed directly with your medical professional – ideally an ALS neurologist, who would be qualified to interpret clinical information for individual situations. Please visit our list of ALS clinics to help you to connect with a clinic in your area.

How to receive support from a Community Lead

1. Determine eligibility for Community Lead support
To be eligible for Community Lead support, you must be:

  • A resident of Ontario
  • Have been diagnosed with one or more of the following:
    • Amyotrophic Lateral Sclerosis (ALS)
    • Primary Lateral Sclerosis (PLS)
    • Progressive Muscular Atrophy (PMA)
    • Progressive Bulbar Palsy (PBP)
    • Kennedy’s Disease (KD)
    • Certain Hereditary Spastic Paraplegia (HSP) diagnoses

If you live outside of Ontario, please register with one of our provincial partners.

2. Register with ALS Canada
If you meet the eligibility criteria and would like to access Community Lead support and other ALS Canada services, please complete the online form. You will receive an automatic notification to confirm your submission (please check your junk mail if you don’t see it). A member of ALS Canada’s Community Services team will reach out within 2 weeks.

3. Initial conversation with ALS Canada community lead
The Community Lead for your area will contact you through your preferred method of communication within two to five days of your registration being processed. The Community Lead will offer a home visit, which aims to learn more about your needs and provide information, resources and guidance as needed.

Making a difference

ALS Canada Community Leads are here for you and your family to ensure that you have the support and guidance to help improve your quality of life as you navigate ALS.

It’s so assuring to know that there’s someone to help guide and navigate us in this very painful and difficult time. Thank you for all your suggestions and tips but most importantly, for your patience, understanding, encouragement and comforting words.

Mr. and Mrs. V. • Newly diagnosed client and spouse