Decide what you want to advocate for

Beyond telling your story and educating your Senator/Representative on ALS, you will want to present one Ask. This can be support for a bill, joining the ALS Caucus or asking for support for for future funding.

You can review Current Asks here to see current and upcoming legislation.

Leaving the Senator/Representative with an Ask is important because it gives them an action they can take to support ALS and allows you to follow up with them to see if you have their support.

Find your Members of Congress

Use this link to find your Representative and Senators.

Schedule a meeting

When you have decided which Senator or Representative you want to meet with, google them to find their website. Request a meeting (there is almost always a button for this). Keep your request simple: We would like to meet with the Senator to talk about how our family has been impacted by ALS. We would like to discuss the difficulty paying for care as well as an upcoming bill, the Promising Pathways Act, that will help people with ALS access treatments.

Invite other constituents

Once you have a meeting date and time, use social media, your local ALS Association or clinic, or google searches to find others in your state or district. Invite them to join your meeting. We like to have a Zoom link so that everyone can have access to the meeting.

Create an agenda

An agenda will make sure you cover all your big points. Include introductions, present background on ALS (see ALS facts page), time to share how ALS has impacted you, and then how the Senator/Representative can help - your ask. It is very helpful to leave a “one-pager” with the Senator/Representative. This should include your contact information as well as your Ask. Examples here.