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Familial ALS Team


Familial ALS 

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.

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

Cassandra Haddad

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

In memory of Barri Falk

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

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