Legislative Affairs Committee: Empowering ALS ChampionsMay 7, 2019
As a high school English teacher, I am constantly telling my students that they need to “find their narrative,” because our stories are the why of our lives. In December 2018, when my 47-year-old husband was diagnosed with ALS, I had something new to incorporate into my narrative. One that leads to finding a cure for a disease that for too long has left millions of families shocked and broken.
When we were given the diagnosis, our doctor had tears in his eyes. He asked us the ages of our kids knowing that the words to follow would be, “limited treatments, no cure, and I’m so sorry.”
I got involved in I AM ALS’ legislative affairs committee because I knew that the way to rewrite the ALS story is to organize and mobilize a network of advocates, and that is exactly what we’re doing.
Since the start of the year, the legislative affairs committee has held weekly conference calls with support from government relations firms Forbes Tate Partners (FTP) and Winning Strategies Washington (WSW). Our mandate is simple to say: we aim to create a movement that taps into the collective power of the larger ALS community.
Doing this, however, is a huge and amazing task. We are led by patients, caregivers, and advocates who know what it means to be in the trenches of the fight. We have been hard at work building the means to activate the network of patients, caregivers, friends, family, and others that we need to secure funding and change public policy to accelerate the timeline to a cure. Over the past few months, we have:
- Identified and enlisted members of Congress as ALS Champions on Capitol Hill
- Begun to organize and mobilize a network of ALS advocates across the country
Do you want examples? We have examples! Specifically, we have secured members of Congress to chair a bipartisan ALS Caucus, developed a charter to get others on board, created an ALS one-pager to educate government officials, met directly with members of Congress who are now behind our fight, and shared a powerful testimony before the House appropriations committee on labor, health and human services, education, and related agencies.
We have also launched a successful social media campaign to publicly recognize the co-sponsors of legislation that seeks to eliminate certain financial roadblocks for those living with ALS and their families, H.R. 1407 and S. 578. Over the past two weeks, I AM ALS has led the effort to thank over 60 lawmakers in collaboration with 19 additional ALS organizations.
And guess what? We’re just getting started.
Looking ahead we plan to publicly launch the ALS Caucus and build it through a larger advocacy push during May, ALS Awareness Month. We are also building our public engagement center that will allow people to take action and take control in this fight.
Over the last 4 months, I have come to accept that my family’s narrative changed in December. But, I will never accept the ALS story we heard from my husband’s doctor. I know that by sheer force of will, good old fashioned “doing,” and your help, our legislative affairs committee is creating a powerful network of government and community advocates who will aid in the fight for funding and policies that will lead to a cure. And, we will rewrite the ending of the ALS story. Together.
If this sounds like your kind of group and you would like to join the movement, please reach out to us via [email protected] Title your email Legislative Advocacy and let us know you are ready to fight too.
Here’s to this community. We are better together. We will win this fight together.
I AM ALS Legislative Affairs Committee Members
- Christa Thompson
- Nicole Cimbura
- Deb Paust
- Gwen Stiewing
- Phil Green
- Sandy Morris
- Sabrina Siddiqui
- Andrew Conlin
- Sarah Benoit
- Dan Biederman
- Bryan Galentine
- Connor McKay
- Jeff Baringhaus
- Kimberly Mattson
- Marian Hofherr
- Molly McDonnell
- Ryan Welch