In The Room with Sandra Abrevaya
Welcome to the third episode of Season Six of the Room Podcast. Today we sit down with Sandra Abrevaya, CEO of Synapticure, an online service dedicated towards providing personalized care for those impacted by ALS.
Sandra got her start at the University of Michigan, before delving into the world of politics. She served as communications director at the House of Representatives, press secretary for Senator Durbin, and then press secretary for the US Department of Education, all before returning to school in 2013 to receive her law degree from Northwestern. From these experiences she gained the ability to build systems of operating from scratch, and exercise creative and entrepreneurial thinking.
While Sandra was serving as a founding CEO of an education nonprofit in Chicago, her husband, Brian, was diagnosed with ALS and told he might only have six months left to live. Through traveling across the country hoping to learn more about his diagnosis, Brian discovered the lack of progress in the ALS sector, and told Sandra he wanted to start a nonprofit. Although reluctant at first, in 2019 the two eventually co-founded I AM ALS, a nonprofit advocacy organization which generates an additional hundred million dollars annually for ALS research.
Taking the lessons learned from I AM ALS, Sandra and Brian decided they wanted to transform the care experiences of ALS patients, which later resulted in their creation of Synapticure.
On today’s episode we discuss Sandra and Brian’s journey of understanding ALS and treatment options, Synapticure’s core product and what it unlocks for patients and their families, and what it means to fund and build a mission-driven startup.
Let’s open the door.
Listen to the third episode of season six here.
Key Theme 1: The journey to understanding ALS and treatment options
After Brian’s diagnosis, he and Sandra met with numerous physicians all of whom declared they could not be of help — a common experience for ALS families. The two then took the research of ALS treatments into their own hands, looking for early studies across the globe that could slow down the progression of Brian’s ALS even for just a year or two. Fortunately, Sandra’s parents were further able to aid the couple in their journey of understanding. As research scientists, they attended ALS symposiums across the world, and helped Sandra and Brian understand the clinical research occurring in order to better comprehend the possible treatment options available.
Key Theme 2: The Synapticure core product and what it provides for patients and families
With Synapticure, Sandra aims to provide patients with hope grounded in recent scientific advances, even if they have not yet translated into clinical experiences. She points to the discovery of genetic variants that, in the past ten years, have been associated with ALS which will allow for the development of therapies that target these genetic subtypes. Because ALS looks different in each patient, Synapticure looks to give access to these rapid medical advances to all patients and their families — not just ones like her and Brian who had the ability to interpret data and clinical trials.
More than anything else, Brian and Sandra are looking to increase patient’s access to ALS clinics as well as to level up the quality of ALS specialty care. As Sandra notes, it would be unthinkable if half of cancer patients never saw an oncologist, but that is currently true of people suffering from ALS. Obstacles to clinic access include difficulty in getting to appointments — often due to the disabling factor of the disease –, as well as extensive wait lists. Because of its online dimension, Synapticure helps reduce these barriers. Each Synapticure patient receives a care coordination experience which allows them to obtain genetic testing opportunities and counseling, removes the administrative burden from them, and then helps link them with top ALS specialists. Looking to the future, Sandra and Brian are bringing in their own teleneurologists with their own physician group, which will allow patients to receive more frequent, consistent counseling.
Key Theme 3: What it means to fund and build a mission-driven startup
Brian and Sandra approached the prospect of fundraising as a “syndicate,” drawing on a panel of people with expertise in medicine, oncology, telemed, aggregating data sets in order to partner with biopharma, etc. This wide range of people involved in brainstorming for fundraising allowed for a diverse investor group.
Her advice for those looking to build a mission-driven first startup is to expect people to resist who are involved in, or specifically benefit from, the traditional way of doing things. Sandra tries to turn this pushback into a rallying cry, using resistance as inspiration.
Because her startup involves what Sandra terms “a death sentence of a disease,” she didn’t let setbacks during the building phase deter her, and instead she focused on what her consumers (or the patients) needed and found the data to back up her mission. Drawing on her personal experience with ALS allowed for Sandra to build her business around the mission of aiding patients, rather than force fitting a solution onto a problem without a proper understanding of what the issue actually is.
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Thanks for checking out this episode of The Room Podcast. Stream this episode on Apple Podcasts and Spotify.
We will be back next Tuesday for a new, inspiring conversation. In the meantime, catch up on all our latest episodes, available now on all podcast streaming platforms, including Apple Podcasts and Spotify.
