Familial ALS Team

Familial ALS 

When: Mondays 4-5 ET

Mission Statement: To raise awareness of familial ALS/FTD and engage, empower, and support the familial ALS community and advocate for them with ALS/FTD researchers and funders. 


  • Create a community of those affected by familial ALS and pursue advocacy opportunities.
  • Develop and/or identify resources regarding familial ALS for neuro-clinicians and researchers.
  • Advocate for public poly and private corporation practices that support vs. inhibit familial ALS needs.

What we do:

  • Raise awareness of familial ALS.
  • Connect the familial ALS community with existing resources or develop new ones.
  • Advocate for legislation and corporate practices.
  • Provide one-on-one mentoring to other members of familial ALS families through I AM ALS’ Peer Support Initiative.

Recent accomplishments:

What are we working on: 

  • Growing our team and increasing participation.
  • Hosting a virtual event on genetic counseling and testing.


Sharing gene status with children:

If you would like to reach out to the co-chairs to learn more about the team, feel free to email [email protected] with the subject line “Attn Familial Team.”


Debbie Lower

Family member in a familial ALS family

Kimberly Hope

Family member in a familial ALS family

Team Members

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