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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:

  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:

Accomplishments:

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:

Co-Chairs

Team Members

Greg Bauer

a family member in a familial ALS family, an ALS gene carrier

Daniel Barvin

a family member of someone we've lost to ALS,
an ALS gene carrier

Connie Becker

a family member in a familial ALS family

Mindy Uhrlaub

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

Barri Falk

living with ALS, an ALS gene carrier, in a familial ALS family, lost a loved one to ALS

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