Familial ALS Team
Familial ALS
When: Fridays 12-1 ET
Chair: Jean (lost Great Grandfather, Grandmother and Mother to ALS, has an Aunt living with ALS and also carries an ALS gene) and Shelly (lost her Mother, three Aunts and Grandfather to ALS, and is at risk for carrying the ALS gene).
Mission Statement: To raise awareness of familial ALS and empower, support and advocate for potential and actual ALS gene holders and their families.
Goals:
- Raise awareness of and create advocacy opportunities for those with familial ALS.
- Develop resources on familial ALS.
- Support policy development that addresses gene discrimination.
What we do:
- Develop resources for familial ALS families.
- Raise awareness of familial ALS.
- Host a monthly social hour for people in familial ALS families.
- Host a monthly European social hour for European people in familial ALS families.
- 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
- Generating familial ALS educational content and guides
- Growing our team and increasing participation
- Hosting a listening session with the FDA about the needs of the Familial ALS community and need for pre-manifest cohorts in clinical trials
- Sharing input on the NIH’s strategic plan for ALS
- 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
a family member in a familial ALS family, an ALS gene carrier
a family member of someone we've lost to ALS,
an ALS gene carrier
a family member in a familial ALS family
a loved one of someone we've lost to ALS, an ALS gene carrier
living with ALS, an ALS gene carrier, in a familial ALS family, lost a loved one to ALS