It was awful timing. Sandra Abrevaya had just given birth to their second daughter and they were about to come home from the hospital. Her husband slipped out: he had a persistent cough and went to see the doctor. Sandra didn’t think much of it.
At the appointment, Brian mentioned weakness in his left hand and his difficulty gripping a pen. “Maybe he had told me about it offhand over the prior months,” Sandra said, “but it didn’t register.” Brian was urgently referred to a neurologist. That’s when they told him: You have ALS.
Brian was given six months to live. He was 37.
Sandra and Brian met nearly a decade earlier while working on Barack Obama’s 2008 presidential campaign. Sandra was drawn in by how good he was at his job, laughing when she referred to that “nerdy” spark. Watching him work, she wondered, “Who is this guy?”
He was “charismatic,” “relentlessly energetic,” and “fundamentally optimistic,” she said. It was infectious; everyone wanted to be his friend.
When Sandra talks about the summer Brian was diagnosed, she calls it the summer “we were diagnosed.” “When you have a partner or a parent with a serious diagnosis,” she said, “sometimes you love them so much that the terror of their diagnosis sits in your own heart.” You are pulled into it together—the fear and grief.
She remembers how picturesque that summer was, and how she felt suddenly uprooted from it: “Brian and I were sucked into this bubble where the rest of the universe was going about their beautiful summer. I would walk down the block and the birds were chirping, the flowers were blooming, and people were laughing. It was so strange to feel that you’re existing in this alternate reality of being told your loved one is going to die while the rest of the world is flourishing.” She didn’t know how to coexist with that other world.
***
Brian Wallach, Sandra’s husband, has gained quite a following on X (formerly known as Twitter). People follow him for his deep and real optimism, for the furious fight within him, for his honesty, his advocacy, his gratitude, and his hope. And nearly every Friday, he tweets a photo of him and Sandra and writes, “It’s Friday, I’m in love.”
It’s true; you can feel it. You can feel it in the way he talks about her, in the way she looks at him. And in the way they have shared this fight for his life, taking their personal battle and turning it into a collective campaign to end ALS. They are the co-founders of I AM ALS, a nonprofit-turned-national-movement dedicated to finding a cure. Their motto? “ALS is relentless. So are we.”
Alongside a global community of people living or loving someone with ALS, they have successfully lobbied Congress to increase ALS research from $10 million to $80 million a year. They have helped produce a film, NO ORDINARY CAMPAIGN, which tells the story of how their fight “has snowballed into a movement…for millions of patients seeking to find their voice in our broken healthcare system.” And they have launched Syncapticure, technology that delivers expert virtual care for individuals and caregivers living with ALS, Alzheimer’s, Huntington’s, and Parkinson’s.
When it comes to Parkinson’s care, their mission is simple: “Improve access to personalized care that makes the experience of the disease less burdensome on patients, families, and providers.” Their care is built on listening: “Everything we’ve done is rooted in what the Parkinson’s community has told us is needed…We wanted it to be as grounded, authentic, and patient- and caregiver-centric as it has been for ALS.”
For Sandra, Synapticure’s commitment to providing support for the caregiver, too, isn’t perfunctory. It’s personal.
Since Brian’s diagnosis, Sandra has struggled with her mental health: “With diseases like ALS and Parkinson’s, there’s a crush of responsibility on the partner or family member.” In an interview with NPR last June, she said she’s open about her hardships with Brian: “What I say to Brian is, ‘This is hell, and I still love you.’”
Sandra’s determined to speak loudly about her experience because caregivers barely have the support to cover their own basic needs. She wants to bring their struggles to light.
***
Early in Brian’s disease, Sandra was his sole caregiver. “I did it all alone,” she said. She slept beside him to make sure he was breathing. She fed him pills and held the glass of water to his mouth when he couldn’t hold it himself. She cut his food into tiny pieces so he wouldn’t choke, then fed him, spoonful by spoonful. She showered him, lifted him into the bathroom, helped him clean himself after the bathroom. “It was imprisonment,” she says.
Today, she knows that the relief she feels from having a small amount of external caregiving support is rare. “It’s an anomaly…The lion’s share of America cannot afford the $300,000 out of pocket that is not covered but that’s required to provide paid caregiving support. And, so, the majority of caregivers in this country are sacrificing themselves.”
“This is what most of America is experiencing,” she went on, “and nobody, really, is saying it loudly enough. I think we’re all trying to respect the privacy of our loved ones and not speak too much about the gory details, but it’s pretty gory. Or we feel like we have to say, ‘It’s an honor to care for this person,’ because we don’t want to make our loved one feel like a burden. But Brian knows that if I can’t be honest with my own suffering in this situation, then I cannot be there for him.”
She knows change will only come if caregivers’ truths are no longer buried: “I wish caregivers didn’t feel like the only other people they can share this secret with is each other.”
***
At the end of National Family Caregivers Month last November, Sandra tweeted, “I love [Brian] with every fiber of my being.” But this journey has been the most difficult of her life. “If there’s a single thing I can add to the universe coming out of this illness,” she wrote, “it is to build something that helps caregivers.”
Enter: Synapticure. “Caregivers acknowledge, ‘Maybe I would benefit from speaking regularly with a therapist or maybe it would make sense for me to be on an antidepressant,’” Sandra said. “But navigating that is nearly impossible. You’re talking about a group of people who often can’t even get a good night’s sleep or shower or eat. So navigating that type of support for yourself is so far from the realm of what’s possible.”
Synapticure was designed specifically to meet this need. They offer an integrative model, meaning your neurologist works hand-in-hand with the full team, including the psychologist and psychiatrist who can help the person with Parkinson’s and the caregiver. “All you should have to do as a patient or a caregiver,” Sandra said, “is say yes. Then the Synapticure team makes it happen for you so you don’t even have to think about how to organize it.”
They’re trying to give entire families living with neurodegenerative diseases a chance not only to trudge on, but to live well now.
***
Today, when Sandra watches Brian with their girls, she says he’s “as loving as ever.” Brian will often tweet about his girls, recently writing, “When something awful happens to you, you have to remember to make space to laugh. Thankfully, my daughters are at the age where they find my dad jokes hilarious.”
But these days, he sometimes has to tell his dad jokes with Sandra as translator. He’s almost completely paralyzed; most days, his voice is weak and few people outside Sandra can understand him. “Our older daughter can translate a little better,” Sandra explained. “Our younger daughter usually needs me to repeat.”
“At 43,” Sandra said, “he should be a young dad throwing his kids in the swimming pool and chatting with them about their school day. So much has been taken from him in the parent he wanted to be.”
But she and Brian try hard to surround their daughters with support and joy. “I feel proud that the girls are such joyful kids,” she said, “and that they have such an appreciation for the fact that Brian is still alive. They know he’s beaten the odds to be alive six years into this journey.”
Their younger daughter, who came home from the hospital on the day Brian was diagnosed, shares a birthday with his ALS anniversary. After they sang happy birthday to her on her recent 6th birthday, she turned to her dad: “I’m so proud of you,” she told him. “You’re still fighting six years later. Don’t give up, Dad. Don’t give up.”
When Sandra and Brian co-founded I AM ALS, they wanted to galvanize the voices of people impacted by ALS, not merely to share their pain but to drive change. “We wanted to be in community with people whose situation was just as difficult as ours,” Sandra said. “And yet we all picked ourselves up off the floor and felt agency to make things different.”
Recently, their efforts came together in a full-circle moment. Years after leaving their jobs as “overworked staffers” at the White House, they returned: First Lady Dr. Jill Biden hosted an intimate screening of their film, NO ORDINARY CAMPAIGN. “We brought our daughters and it was a beautiful event where they celebrated and honored Brian and his work. It was so emotional,” Sandra said. It marked years of collaborative effort to create meaningful change. This has always been what drives them.
For Sandra, she wouldn’t want to do it with any other partner. “I am anchored in Brian’s optimism,” she said. “I need it. I lean on him for his insistence on living in the moment, for his gratitude and his hope for what’s possible.” “Brian is almost completely paralyzed,” she tweeted recently, “but he still runs circles around me strategically and intellectually – same as when I fell in love with him in 2008.” Over a decade later, she’s still watching him work—and she’s still smitten.
Brian and Sandra are forever fighters and believers: maybe—finally—his generation will be the first to beat ALS.
