If you or someone in your family has been discriminated against by life, long-term care, or disability insurers due to the results of a genetic test, we want to hear from you.

Your ALS story and experiences matter!

1. Have you been denied insurance because of results of a genetic test (and likely asymptomatic, meaning you have just tested positive for a gene but it has not resulted in diagnosis)?

2. Are you not getting genetic testing for fear of discrimination?

3. Have you been diagnosed with a genetic form of ALS?

4. Do you have a family member that has the genetic form of ALS?

If you answered yes to any of the questions above, we would like to hear from you!

By sharing your story, you can help ensure that states protect individuals from genetic discrimination and prohibit life, long-term care, or disability insurance companies from denying coverage or setting higher premiums based on genetic information.

Share your personal ALS story and why access to genetic testing without fear of discrimination is essential.

Choose to share your story on video, text, or both. Videos are limited to 5 minutes and you will have the ability to review and re-record before submitting.

Your experiences can help persuade lawmakers to support policies that ensure fairness and accessibility for all.