Familial ALS Team

Familial ALS 

When: Fridays 12-1 ET

Chair: Jean (lost Great Grandfather, Grandmother and Mother to ALS, has an Aunt living with ALS and also carries an ALS gene) and Daniel Barvin (lost Grandfather, Aunt, Uncle and Father to ALS and also carries an ALS gene)

Mission Statement: To raise awareness of familial ALS and empower, support and advocate for potential and actual ALS gene holders and their families.


  1. Raise awareness of and create advocacy opportunities for those with familial ALS. 
  2. Develop resources on familial ALS.
  3. Support policy development that addresses gene discrimination.

What we do:

  • Develop resources for familial ALS families.
  • Raise awareness of familial ALS.

What are we working on: 

  • Developing an outreach program to raise awareness of familial ALS within the ALS community.
  • Generating familial ALS educational content and guides.

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