Sandra Abrevaya didn’t expect to turn out to be the CEO of a for-profit company. She spent her early profession in public service – serving in the House, Senate, and White House, in addition to serving in Chicago’s municipal government – before moving into the nonprofit sector. But when her husband, Brian Wallach, was diagnosed with amyotrophic lateral sclerosis in 2017 and given six months to live, all the things modified. Since then, the two have worked repeatedly to enhance access to treatment for the neurodegenerative disease.
In 2019, they founded the nonprofit organization I AM ALS to build community for people diagnosed with ALS. The I AM ALS-led movement has led to massive changes – including a $1 billion increase in public funding for ALS research because of lobbying – but the access framework treatment ALS was still miles away from where it needed to be.
So in 2022, they became co-founders Synapticure with two people with previous experience in construction corporations – Dr. Jason Langheier, Jonathan Hirsch – in addition to Brian’s brother, Peter. Through telemedicine, the company helps patients with neurodegenerative diseases navigate and access care and treatment where the traditional healthcare system lags, and helps their caregivers find the comprehensive support they need. This 12 months, the company greater than doubled its patient base and launched latest services, including a dedicated program to support patients with Alzheimer’s disease and other cognitive disorders. All of this made Abrevaya a finalist on our Entrepreneur 2024 list of 20 modern leaders.
By creating I AM ALS, you have already built a huge community. At what point did you realize you desired to take it a step further with Synapticure?
Thanks to I AM ALS, Brian and I are very proud to have led the effort to generate over $1 billion in additional federal funding for ALS. We know it will have a huge impact. We then worked hard to advocate for the approval of recent therapies at a different pace than in the past. Then Brian and I looked at some of the latest Alzheimer’s therapy approvals and saw how almost no one was prepared for it.
It doesn’t matter whether latest therapies are approved if people don’t have access to doctors who can prescribe them, and if we do not have a workforce that is willing to provide people really good guidance about which of those therapies might be appropriate. , helping people make decisions about treatment. Because that is what families want at once. None of those therapies is yet a cure, but each has some ability to delay life. Who knows what might be found during this 12 months? Families do not want an exclusively palliative approach to hospice care, which is what the current system is designed for. They want someone to do the proper research for them and give them really thoughtful advice on what their treatment plan needs to be. It’s a moment that Brian and I experienced first-hand, so we raced to try and create that chance.
How has your previous work in government and nonprofit organizations influenced your work at Synapticure?
I think all the things from working on the campaign to being one of the few people in the latest administration to starting and building a nonprofit is all a very entrepreneurial effort. They require a lot of proving themselves and accepting a lot of rejection calmly. No matter what I do now, which is often telling my very own story, storytelling all the time has an element of encouraging the community to partner with a latest company or organization that has a mission. Everything from building teams from scratch to telling stories around purpose and mission is inside me and has been a a part of every role I’ve had before.
Most of the people building Synapticure have experienced ALS or one other neurodegenerative disease firsthand. Could you tell me about putting the band together?
Brian and I had just entered this disease space, seeing that usually the patient or caregiver was included in a more symbolic way, which really disillusioned and frustrated us. When we began getting involved in building this work, we thought, “We’re not just going to have patients and caregivers on the side, and we’re not just going to have like 5% of management representing them.” While there are many organizations that incorporate some degree of patient and caregiver voice, we attempt to push the envelope to be designed by patients and caregivers.
In 2024, you doubled your patient base. How did you overcome the challenge of ensuring that folks diagnosed with neurodegenerative diseases knew about Synapticure?
One of the truly unique things about the company is that its birth and growth were organic. For the first few years, we simply said, “We know what families want, and we’re going to build a team of doctors and nurses who can deliver it. Then we’ll just let people know it’s here and we’re sure they’ll like it.” We built it from the ground up, and by the time we launched Synapticure, we had shown the patient and caregiver community that Brian and I were genuinely committed to creating this experience more supportive and higher for the families people trusted and proceed to trust us with.
I know you’ve got been deep in the technique of raising your Series A. What is your advice for entrepreneurs looking for financing?
When we began talking about this need for these diseases, it was difficult because it gave the impression of the attention of the healthcare ecosystem was elsewhere and we were the only company doing it. In fact, we were one of the first on the market. It takes faith that you simply know there is a problem, you know it must be solved, and if for some reason the universe is not listening to it at once, keep going, stick with it, and potentially over time people will see the need. We just believed in the need so much that we had to inform ourselves to maintain going, even if others weren’t focused on it.
How to prioritize when adding latest services?
The decisions we make are based on what the patients we currently work with need. But we also remain in constant contact with the ecosystem of local nonprofit organizations and leadership that underpin most individuals’s every day experiences with these diseases.
The other thing that was really interesting is that as a caregiver, I actually dealt with a lot of mental health challenges. Honestly, hearing in your 30s that your husband has a few months to live – what family doesn’t need support to deal with that from a mental health standpoint? It was very necessary to Brian and me that behavioral health be a a part of the company’s offering. It’s really necessary that it isn’t just for patients – you possibly can do completely separate sessions for the caregiver. This is a latest service line where we have exceeded our behavioral health goals. People just find it irresistible. They find it irresistible when the therapist and psychiatrist on their team discuss with a specialist in neurodegenerative diseases, i.e. their doctor. It’s a truly integrated approach.