Familial ALS Team

Familial ALS 

When: Mondays 4-5 ET

Chair:

Mission Statement: To raise awareness of familial ALS and empower, support and advocate for potential and actual ALS gene holders and their families.

Goals:

1. Raise awareness of and create advocacy opportunities for those with familial ALS. 
2. Develop resources on familial ALS.
3. Support policy development that addresses gene discrimination.

What we do:

• Develop resources for familial ALS families.
• Raise awareness of familial ALS.
• Created and maintain the Genetic ALS Observational Studies tab on ALS Signal.
• Provide one-on-one mentoring to other members of familial ALS families through I AM ALS’ Peer Support Initiative.

Accomplishments:

• Presented on the the Genetic ALS Observation Study Dashboard at the International Symposium on ALS/MND
• Organized the conference Our DNA Doesn’t Define Us: Strategy Sessions for Ending Genetic Discrimination
• Hosted several conversations by scientists working on genetic ALS
• Collaborated with other teams to participate on panels to raise awareness of Familial ALS
• Explained the needs of the Familial ALS community to drug sponsors

What are we working on: 

• Creating an initiative for members of familial ALS families to share their story of how being a gene carrier has uniquely impacted their life
• Developing an outreach program to raise awareness of familial ALS within the ALS community
• Growing our team and increasing participation
• Working with organizations to develop ways for Familial ALS members to be able to be open about their gene status without consequences
• Continuing efforts to expand genetic discrimination protections

Resources:

• A personal story about telling children about your gene status, by Mindy Uhrlaub
• A personal story about participating in research, by Jean Swidler

Co-Chairs

Team Members