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.
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.
Recent accomplishments:
- Hosted a virtual event to raise awareness of familial ALS.
- Hosted a virtual event to help people cope with generational trauma and ambiguous grief.
- Hosted a virtual event on genetic counseling and testing.
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
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/
Co-Chairs
Family member in a familial ALS family
Family member in a familial ALS family
Team Members
person living with familial ALS
a loved one of someone we've lost to ALS, an ALS gene carrier
