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.
Goals:
- 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:
- Hosted a virtual event to raise awareness of familial ALS.
- Hosted a virtual event to help people cope with generational trauma and ambiguous grief.
- Created our goals for the next 12 months.
What are we working on:
- Growing our team and increasing participation.
- Hosting a virtual event on genetic counseling and testing.
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 [email protected] with the subject line “Attn Familial Team.”
Co-Chairs
Debbie Lower
Family member in a familial ALS family
Kimberly Hope
Family member in a familial ALS family
