Familial ALS Team
When: Fridays 12-1 ET
Chair: Jean Swidler (lost her great grandfather, grandmother, and mother to ALS, has an aunt living with ALS, and carries an ALS gene), and Julie Granning (part of a familial ALS family).
Mission Statement: To raise awareness of familial ALS and empower, support and advocate for potential and actual ALS gene holders and their families.
- 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.
- 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
- A personal story about telling children about your gene status, by Mindy Uhrlaub
- A personal story about participating in research, by Jean Swidler
a family member in a familial ALS family,
a family member of someone living with ALS,
an ALS gene carrier,
someone who cared for a person we've lost to ALS
part of a familial ALS family
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
Caregiver to someone with ALS, family member in a familial ALS family, ALS gene carrier, lost a loved one to ALS
lost to ALS, an ALS gene carrier, in a familial ALS family, lost a loved one to ALS