In December of 2024, I received a text message from a friend, Eric Swalwell, whom we've known for decades and who has served in Congress since 2013. Eric asked if, confidentially, we would meet with his good friend Eric Dane, who was just diagnosed with ALS (and happened to be a famous actor).
Since my husband Brian Wallach's diagnosis with ALS in 2017, we have devoted all we have to ALS and neurodegenerative diseases. We've launched I AM ALS, which has quickly become the nation's leading advocacy organization, having driven up federal funding for ALS by $1.5 billion over 7 years, resulting in critical scientific progress. We've launched a healthcare company, Synapticure, to provide medical care for people living with ALS, Alzheimer's, and Parkinson's anywhere in the country.
We've written laws, helped pass laws, worked closely with the FDA, and generally done any and everything possible to make the day we cure this horrible disease come sooner. Whether we wanted to or not, we had become global voices on ALS and national leaders on change.
On January 8, Brian and I had a Zoom meeting with Eric to see how we could help. Eric shared his journey to his diagnosis and his initial symptoms (not being able to hold chopsticks), which were so similar to Brian's (not being able to hold a pen). He talked about his two young daughters, and we talked aboutourtwo young daughters. He talked about how much he wanted to fight this disease, and we shared all of our resources and experiences, answering his many questions.
By the time we had that first meeting, Brian was completely paralyzed and could not speak. I didn't want to scare Eric so I shared with Eric that Brian was seven years into the disease, that it was amazing he was still breathing on his own, and that while it was not easy at this stage, he was enjoying watching his daughters grow up — something he was not expecting to do when he was diagnosed at 37 with a 2-year-old and a newborn. I wanted to encourage Eric. To show him what was possible. We clicked in that first meeting. It wasn't an easy conversation, but it was the first of several over the coming months, all before Eric decided to be public about his diagnosis.
Once Eric went public, we had another meeting, and he said he was ready to make an impact. I can't remember his exact words, but it was the equivalent of, "Put me in coach; you all know DC, tell me what would be most helpful." I wasn't prepared for that. When we finished that Zoom, I turned to my husband and said, "Wow, he's attractive and humble." We laughed as we registered what a powerful advocate Eric could be for the cause.
Once Eric went public, we had another meeting, and he said he was ready to make an impact. I can't remember his exact words, but it was the equivalent of, "Put me in coach; you all know DC, tell me what would be most helpful." I wasn't prepared for that. When we finished that Zoom, I turned to my husband and said, "Wow, he's attractive and humble." We laughed as we registered what a powerful advocate Eric could be for the cause.
In September, an Instagram video Eric recorded in an I AM ALS T-shirt — direct, unvarnished, urgent — traveled farther than any of us anticipated. But what moved me most was not the number of views. It was the ripple effect. New supporters reached out. Lawmakers' offices heard from constituents. Families who had just received a diagnosis found our community sooner.
Not long after, Eric jumped on a plane from LA and traveled to Washington, D.C. with the I AM ALS team. He met with countless members of the House and the Senate. In meeting after meeting, he advocated for reauthorization of the ACT for ALS Act — the bipartisan legislation Brian and others wrote with Congressman Quigley several years ago. Signed into law in 2021, it provides $100 million annually to expand access to experimental treatments and accelerate research. That legislation is set to expire in 2026.
Eric put in a brutal day with us, from early-morning press interviews to meetings with the FDA to meaningful conversations with every senator he could find, and he kept pace. It was remarkable for so many reasons, the least of which was that he had never been in a Capitol Hill office before in his life.
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Eric learned the substance of the legislation on the fly, but by the end of our day, he had his messages down: ACT for ALS gave hundreds of people with no hope access to investigational treatments that were extending lives in many cases. It provided research infrastructure that had never been available before, and it was overwhelmingly supported by people who could not agree on anything else. In short, ACT for ALS is working even better than the sponsors and the community envisioned. For families like ours and Eric's, we don't have time to debate policy. For all of us, it's a ticking clock.
When Eric sat across the table from House Majority Leader Steve Scalise (R-LA) in his conference room tucked away in the upper floors of the Capitol Building and surrounded by his senior staff, Eric looked Leader Scalise directly in the eye and said, "Mr. Leader, just as you fought for your life, I'm fighting for mine now." It was at that moment that Leader Scalise turned to his staff and openly suggested trying to find a way to fast-track ACT for ALS' renewal.
As he wove between meetings with lawmakers, even at his most vulnerable moment — physically and psychologically — he was so generous with his time and attention and understood so naturally that shaking every hand, whether he was talking to the White House Press Secretary or the most junior staff assistant in a Congressional office, and taking every picture was part of what it would take for him to have an impact on the disease.
There was also dark levity. The kind us families navigating this terminal illness know all too well. In between meetings, Eric and I AM ALS board member Dan Tate, who has lived with ALS for eight years and is our North Star in DC, were comparing notes on their versions of ALS as everyone does. At the time, Eric's ALS dramatically restricted his upper body movement and limbs, whereas his walking was nearly normal. Dan's ALS makes walking an adventure, whereas his upper body and limbs are still strong. Eric joked, "Between the two of us, we have a functioning human body."
I don't think any moment captures Eric's power as an advocate and our beautiful partnership better than an interaction we had at the end of a long day when a senior Senator shared that his best friend was diagnosed six months ago and is progressing rapidly. He said to Eric, "Your work giving people hope is absolutely essential, and your willingness to use your global visibility and character and quality as an actor;" and then he turned to the I AM ALS team and said, "andyourleadership in the government relations community here…I mean, in the same circumstance, I would not be able to do it. So thank you." And with that, he was committed to moving the legislation forward.
My husband Brian is lucky. He is still alive. I feel that deeply and most especially every time we lose another friend to ALS. On Thursday night, when I told Brian that we lost Eric, Brian — unable to speak or move anymore — asked for his eye gaze machine. And with his eyes, slowly, letter by letter, he typed: "Eric is a legend. I am so proud of all he accomplished."
Eric chose to use his time to fight. And we will honor him by continuing to do the same — until we end ALS.
Below, you can watch Dane's "final message" to his children and the rest of the world:
Sandra Abrevaya is caregiver to her husband Brian Wallach fighting a currently terminal illness, co-founder ofI AM ALS, and co-founder and CEO ofSynapticure.
The postEric Dane's Final Fight: How an ALS Diagnosis Turned Into a Powerful Call to Actionappeared first onKatie Couric Media.
In December of 2024, I received a text message from a friend, Eric Swalwell, whom we've known for decades and who ha...
