Familial ALS Team

Familial ALS 

When: Mondays 4-5 ET


Mission Statement: To raise awareness of familial ALS and empower, support and advocate for potential and actual ALS gene holders and their families.


  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:


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



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

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