Familial ALS Team

Familial ALS 

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.
  • Advocate for policy 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 we are working on: 

  • Supporting familial ALS community members and sharing resources


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 community@iamals.org with the subject line “Attn Familial Team.”

If you would like to learn about other I AM ALS Community Teams, click here: https://www.iamals.org/action/join-an-i-am-als-community-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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