Lisa Boyette, describes her career path as “circuitous.” And although it has had twists and turns along the way, there has been a clear direction along the journey: to develop solutions for patients with no good options, starting with her own family.

While attending high school in eastern Virginia, Boyette started doing research at the Virginia Institute of Marine Science. “I just fell in love with the whole process. I worked in a lab all through college, and at some point, this idea of doing an MD/PhD started to appeal to me,” she says. “Being an engineer by training, I thought that if I could build or invent something that could help people, then I could reach even more patients than I would seeing them one-on-one in a clinic or an operating room. As an MD/PhD I would be able to do both.”

In looking for an MD/PhD program, Boyette checked out the University of Virginia and liked what she saw. She applied and was quickly accepted. But there was another reason that helped her make the decision to choose UVA over another institution. “I was considering my brother, Jon, too. We’re seven years apart – when I was starting medical school, he was just starting high school and I didn’t want to miss watching him grow up since we were so close. A big part of my decision was to be able to stay in-state and be close to my family,” she says.

Not long after she entered the program, however, things started falling apart. During her first two years at UVA, Jon became seriously ill and her mother was diagnosed with ovarian cancer. Meanwhile, she had a great mentor and loved the work she was doing in her lab, until it lost its NIH funding and she had to re-group. “I just wanted to keep moving forward,” Boyette recalls. “I went back to medical school. I did a lot of away rotations and took advantage of the unique opportunities that exist for medical students, including a research rotation with Bill Steers, who was wonderful to me. Many caring faculty members helped keep my research career alive during that time.”

After earning her MD, Boyette restarted work on her PhD at the National Institutes of Health through a Graduate Partnership Program with UVA. Thinking about the next step, Boyette says she found herself conflicted about doing a residency, even though she had been interested in pediatric neurosurgery. “At home, my brother kept getting more and more ill. I ultimately decided to pursue research full-time. I did a post-doctoral fellowship at the University of Pittsburgh, and then I decided that even the traditional research path wasn’t really going to work for me,” she says.

It was her brother’s diagnosis with the rare biliary disease primary sclerosing cholangitis, or PSC, and several other autoimmune conditions, that provided Boyette with the framework for the organization that is today called Curable. While Jon was being told he would need a liver transplant and even then the disease could come back, Boyette found herself frustrated with the lack of options. “I just thought, this 50-year pathway to actually curing a disease… this is no good. For me, it was like seeing somebody tied to a train track and the train is coming,” she explains. “Writing an NIH grant does not seem like the appropriate reaction to that kind of news. That’s what I was struggling with on a daily basis.”

Boyette started exploring her idea to step outside of the traditional research model. “I just starting talking to people about what was out there, if there was a magical place where I could go… I had this idea that with unlimited tools and a big team, we could start solving these things more on the order of five years. I was told a lot how cute and idealistic it was that I wanted to help my brother. Finally, I stumbled onto my business partner, Dietrich Stephan. We sat down and talked for 90 minutes, and he said, ‘Let’s do something.’ And I thought, ‘Oh boy, this is it.’”

Stephan, a PhD geneticist who was founding chairman of Neurogenomics at TGen, is now chairman of Human Genetics at the University of Pittsburgh and turned out to have a similar background to Boyette. He had lost his mother to cancer when he was young, and it motivated him to pursue a career in biomedical research. Together they founded a non-profit in 2014 called Save Jon, later re-named Curable. “We wanted to open a solutions shop for patients,” Boyette says. “The amount of interest and support we have had – from clinicians, from frustrated researchers, from some very forward-thinking industry partners – has been astonishing. In two years we have generated new activity around one rare disease approaching $20 million, independent of industry sponsored trials. We’re getting calls about taking on new indications. People want to work together, to address unmet needs, to see the power of big science unleashed on the next generation of unsolved diseases. We have had to build a platform where that work could happen. No one can be an expert in everything. It takes huge, dedicated teams.”

Boyette says that Curable is a necessary piece of the puzzle in curing disease alongside basic science researchers and clinicians. For her, the role of Curable is clear. “The emphasis is not on publishing fancy papers, because if my brother’s not at the Thanksgiving table, who cares? The emphasis is not on making money. We have an opportunity to address human suffering in near-real time, to make incredibly big problems into something manageable. Patients are our direct clients, and I feel like that’s something that is really unique in today’s medical climate,” she says.

To learn more, visit Curable.org.