Her Husband Was Diagnosed With ALS, And She Knew Cutting-Edge Treatments Would Extend His Life. Now, Her Company Helps Others Get Care. Sandra Abrevaya and her husband Brian Wallach started Synpaticure to help patients with neurodegenerative diseases access expert doctors, trials, and cutting-edge treatments, along with support for caregivers.

Sandra Abrevaya didn't expect to become the CEO of a for-profit company. She spent the beginning of her career in public service — working in the House of Representatives, the Senate, and the White House, along with a position in municipal government in Chicago — before going into the nonprofit sector. But when her husband Brian Wallach was diagnosed with Amyotrophic Lateral Sclerosis in 2017, and given six months to live, everything changed. The pair have relentlessly worked to improve access to treatment for the neurodegenerative disease ever since.

In 2019, they founded the nonprofit I AM ALS to build a community for people diagnosed with ALS. The movement led by I AM ALS has amounted to immense change — including a $1 billion increase in public funding for ALS research linked to their lobbying — but the framework for accessing treatment of ALS was still leagues away from where it needs to be.

So in 2022, they co-founded Synapticure with two people with previous experience building companies — Dr. Jason Langheier, Jonathan Hirsch — as well as Brian's brother, Peter. Through telemedicine, the company helps patients with neurodegenerative diseases navigate and access care and treatments that the traditional healthcare system has lagged behind on — and helps their caregivers find the comprehensive support they themselves need. This year, the company more than doubled their patient base and launched new services, including a dedicated program for supporting patients with Alzheimer's and other cognitive conditions. All of this made Abrevaya a finalist on our Entrepreneur of 2024 list of 20 innovative leaders.

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You'd already built a huge community with the creation of I AM ALS. At what point did you realize you'd want to take it a step further with Synapticure?

With I AM ALS, Brian and I are so proud to have led the charge on generating what is now an additional over $1 billion in federal funding for ALS. We know that's going to have a huge impact. We then worked so hard to advocate for the approval of new therapies at a different pace than has historically happened. Then Brian and I watched some of the new therapy approvals for Alzheimer's and how almost no one is prepared.

It doesn't matter if new therapies get approved if people can't access the doctors to prescribe them, and if we don't have a workforce that is prepared to give people really expert guidance on which of these therapies could be a good fit, helping people navigate these treatment decisions. Because that's what families want now. None of these therapies are a cure yet, but each of them has some ability to extend your life. Within that year, who knows what will be found? Families don't want just this palliative hospice care approach, which is what the current system is set up to do. They want someone to provide the right testing for them and to give them really thoughtful guidance on what their treatment plan should be. That's a moment that Brian and I experienced firsthand and so we raced to try to create that opportunity.

How has your previous work in government and the nonprofit world informed your work at Synapticure?

I think that everything from working on a campaign to being among the few people in a new administration, to launching and building a nonprofit are all very entrepreneurial efforts. They require a lot of putting yourself out there and taking a lot of rejection in stride. Whether it's what I currently do, which is oftentimes telling my own story, there's always a component of storytelling to rallying a community to come on board with a new business or organization that has a mission. Everything from the muscle of building teams from scratch to storytelling around a purpose and a mission is all very much in me and a part of every kind of role I've had prior to this one.

Most of the people building Synapticure have experienced ALS or another neurodegenerative disease firsthand. Could you tell me about assembling your team?

Brian and I just came into this disease space seeing that a lot of times a patient or a caregiver would get included in a more tokenized way, and that really disappointed and frustrated us. When we started to get involved in building this work, we were like, "We're not just going to have patients and caregivers on the side, or just have them represent like 5% of the leadership." While there are a lot of organizations that to some extent include patient and caregiver voice, we're trying to push the envelope to have patients and caregivers design it.

You doubled your patient base in 2024. How have you managed the challenge of making sure people diagnosed with neurodegenerative diseases are aware of Synapticure?

One of the really special things about the company is that its birth and growth were so organic. In the first few years, we just essentially said, "We know what families want, and we're going to build a team of doctors and nurses who can deliver it. Then we're just going to let people know that it's here, and we're pretty sure they're going to love it." We built it from scratch, and by the time we launched Synapticure, we had shown the patient and caregiving caregiver community that Brian and I are so authentically committed to making this experience more supportive and better for families that people trusted and continue to trust us.

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I know you've been deep in the process of raising your Series A. What's your advice for entrepreneurs seeking funding?

When we started talking about this need across these diseases, it was hard because it felt like the attention of the healthcare ecosystem was elsewhere and we were the only company doing this. We were essentially one of the first in the market. It requires faith that you know that there's a problem, you know that it has to be solved, and if for some reason the universe is not paying attention to it at this moment, keep going, stick with it, and potentially in time, people will see the need. We just believed so, so much in the need that we had to tell ourselves to keep going, even if others weren't focused on it.

How do you figure out what to prioritize as you add new services?

The decisions we are making are informed by what our patients that we're currently working with are telling us they need. But also we're staying really connected to this ecosystem of on-the-ground nonprofits and leadership that are very much the backbone of most people's day-to-day experiences with these diseases.

The other thing that's been really interesting is that I have really dealt with a lot of mental health challenges as a caregiver. Frankly, to be told in your late 30s that your husband has a few months to live — what family doesn't need support to navigate that from a mental health perspective? It was very important to Brian and I that behavioral health become a part of what the company provides. It's really important that it's not just for the patients — you could do totally separate sessions for the caregiver. That is a new service line, and we've exceeded our targets in behavioral health. People just love that. They love that the therapist and the psychiatrist on their team talk to the neurodegenerative disease specialist, their doctor. It's a real integrated approach.