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.

Goals:

• 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.
  • https://www.iamals.org/action/peer-support-initiative/

Recent accomplishments:

• Hosted a virtual event to raise awareness of familial ALS.
  • https://www.youtube.com/watch?v=MbE05z2-Gj0&t=258s
• Hosted a virtual event to help people cope with generational trauma and ambiguous grief.
  • https://www.youtube.com/watch?v=0sArCECsBsY&t=441s
• Hosted a virtual event on genetic counseling and testing.
  • https://www.youtube.com/watch?v=h02NsHQEBAc

What we are working on: 

• Supporting familial ALS community members and sharing resources

Resources

Sharing gene status with children:

• A personal story about telling children about your gene status, by Mindy Uhrlaub
  • https://www.iamals.org/stories/mindy-uhrlaub-how-i-talked-to-my-teens-about-my-genetic-status/

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/volunteer/