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:
- 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.
- 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

Mindy Uhrlaub
a loved one of someone we've lost to ALS, an ALS gene carrier

Cassandra Haddad
Caregiver to someone with ALS, family member in a familial ALS family, ALS gene carrier, lost a loved one to ALS