Legislative Priorities of the Legislative Affairs Community Team in the First 100 Days of 2021
The fierce advocates on I AM ALS’ Legislative Affairs Community Team have set an aggressive but critical agenda for the first 100 days of 2021. Here are the team’s top priorities:
Legislative Affairs Community Team Priority 1
The I AM ALS Legislative Affairs Community Team will connect with every single member of the 117th Congress. Critical to this effort is building relationships and sharing the impact ALS has in their communities and districts, cultivating champions for change now and for generations to come.
Legislative Affairs Community Team Priority 2
This team has set a goal of growing the ALS Caucus to more than 200 members at the federal level in the first 100 days of 2021 and working to develop regional teams to build state ALS caucuses, bringing in more champions who can deliver meaningful change. I AM ALS advocates started the ALS Caucus in 2019 to develop ALS champions at the federal level and facilitate the creation and passage of laws addressing needs in the ALS community. At the end of 2019, the Legislative Affairs Community Team had recruited 86 members of the House of Representatives to the ALS Caucus. Over the course of 2020, they doubled-down on these efforts, leading to the creation of an ALS Senate Caucus and growing total Caucus members to 158 across the House and Senate.
Legislative Affairs Community Team Priority 3
Team work makes dream work. The more advocates we have, the better. This is why the I AM ALS Legislative Affairs Community Team will develop an advocacy training within the first 100 days of 2021. The training will strengthen the movement by adding and empowering advocates.
The I AM ALS Legislative Affairs Team is on a mission to engage and create more advocates in order to secure federal funding and change public policy to accelerate ALS treatments and cures and support those living with ALS and their loved ones. If you’re interested in being part of changing history with this group, check out more here.
We will find cures for ALS. The only question is when. That answer depends on you.
Stay informed on I AM ALS’ progress and what you can do to help us make hope real.
Statement on Patient Access to Therapies
While we seek cures, we stand committed to people living with ALS today having a chance to access treatments that could slow disease progression and give them more time. We firmly believe that even one more person with access to an ALS treatment that might work for them is progress.
Lou Gehrig Day for MLB
After a group of advocates impacted by ALS banded together to honor Lou Gehrig and the ALS community and raise awareness for ALS, Major League Baseball announced a league-wide Lou Gehrig Day that will be held yearly on June 2nd.
The Road to Accessing Promising Treatments
As we said last week, I AM ALS will not stand for the status quo when that means tens of thousands of people are diagnosed with ALS and told there is nothing medicine can do. We also recognize that leadership doesn’t mean we have all of the answers. That’s why we spent the last week listening to the ALS community. Here is our proposed response, not to the outcome of a single trial but to everything we see happening in ALS research.