Legislative Affairs Team
When: Wednesdays 4:00 pm – 5:00 p.m. ET
Co-Chairs: Nicole Cimbura (lost her husband to ALS), Glen Rouse (living with ALS) Jack Silva (ALS advocate), and Troy Fields (living with ALS)
Mission Statement:
To empower and support the ALS community in their legislative advocacy efforts. We strive to build a team of passionate revolutionaries who together will develop meaningful relationships with federal legislators to secure public policies that will expand access to clinical trials, accelerate ALS therapies, eliminate access barriers and support those living with ALS and their loved ones.
What do we do:
- Raise awareness about ALS-related legislation.
- Advocate for ALS-related legislation by engaging with US legislators.
- Recruit, activate and train advocates.
Active members are ALS advocates who are willing to write, meet, and tweet with legislators and participate in other ALS initiatives.
Goals:
- Pass legislation that facilitates access to treatments and cures and/or improves the lives of people living with ALS.
- Increase federal research budgets for ALS.
- Increase the number of legislators in the ALS House and Senate Congressional Caucus.
- Advocate for ALS-related legislation by engaging with U.S. legislators.
Accomplishments:
- Created and continue to grow the ALS Congressional Caucus in the US House of Representatives (137 members) and Senate (22 members)
- Create thank you tweets and letters and asking letters-
- 2 routes
- Create thank you tweets and letters and asking letters-
- Helped pass The ALS Disability Access Act of 2019
- Helped pass and annually fund ACT for ALS ::link::
- Helped increase the Department of Defense spending on ALS research from 10 million (2019) annually to 40 million (2022).
- Helped launch and populate I AM ALS’ Legislative Tracker
- Shaped the content of the House of Representatives’ Energy and Commerce Health Subcommittee hearing on ALS and other neurodegenerative diseases, The Path Forward: Advancing Treatments and Cures for Neurodegenerative Diseases.
What are we working on:
- Creating more advocacy guides and trainings
- Building long-lasting relationships with legislative offices
- Lobbying Congress to fund ACT for ALS and increase funding for federal ALS research funds
- Having a constituent for every single congressional district. Help out by clicking here.
- Passing the Justice for ALS Veterans Bill and Elizabeth Dole Home Health Care Act
- Expanding the ALS Caucus
Co-Leads
living with ALS
an ALS advocate with no connection to ALS
lost a loved one to ALS
living with ALS
Team Members
daughter of someone living with ALS, caring for someone living with ALS
father is living with ALS
living with ALS
a loved one of someone living with ALS
living with ALS
Lost a loved one to ALS
a U.S. military veteran living with ALS
a family member of someone we've lost to ALS
a family member of someone we've lost to ALS
a family member of someone living with ALS
a loved one of someone we've lost to ALS
lost best friend to ALS
a loved one of someone we've lost to ALS, ALS advocate
cared for a loved one we've lost to ALS
living with ALS
living with ALS
a friend of someone living with ALS
a family member of someone we've lost to ALS
Family member of someone we've lost to ALS
A friend of someone we’ve lost to ALS
a loved one of someone we've lost to ALS
a family member of someone we've lost to ALS
a U.S. military veteran living with ALS
a family member of someone we've lost to ALS
living with ALS
an ALS advocate with no connection to ALS