Rare disease has shaped not only Drew Harrison’s life; it has become his career motivation and propelled his entrepreneurial journey.
After an early career in the life sciences, in 2011 Harrison accepted a business development position with a prominent clinical research organization (CRO). His primary interest was in the nice financial returns it offered, but also, he said, he wanted to explore the industry.
“I started in an entry-level position,” he said. “It was a great experience. I got to learn the industry while working in it. I was in clinical pharmacology for three-and-a-half years, and then decided I wanted to get into rare diseases.”
What struck Harrison about the field of rare disease is that it’s expensive and difficult for patients. Clinical trials are not frequent; drugs, when they exist, are expensive because of the limited market. He left his employer to join a small CRO. When that proved not a good fit, he went to another, and not long afterward, he had a stroke. His perspective and his “why” began to change.
“We’re working on a stroke study, and I started to realize, ‘I want to be in on that, and I want to help. I don’t care about the money,’” he said.
After a period of recovery from the stroke, he went back to his original employer and led a large global business development team. But lightning struck again: Two years ago, his teenage daughter began having seizures.
“Nobody has a drug for it nobody has a treatment for it; nobody has anything for it,” Harrison said, referring to the source of her seizures. “I managed a global team, and I went upstairs at 5 every night, making sure she was alive. That’s when I became an advocate. I had to do my own research.”
In researching CROs and their trials, Harrison had an “aha!” moment about the industry.
“About nine years ago, we started talking about patient-centricity, patient voice, ‘in it for the patient,’” he said. “But I sat back and thought: I’ve been doing this for 17 years, and I have presented on patient-centricity and patient voice and patient experience … and I have never seen a patient come to the table and sit with me – for strategy, for operations, for… (developing) a protocol. For a rare disease, I don’t know who’s better to help with that than somebody with a rare disease, who knows what it’s like.”
That realization placed Harrison on a new track. He left his job and, while sitting out his noncompete period and advocating for his daughter, mapped out a new business that would put patients at the heart of clinical trials.
Synaptigen launched officially in December, taking its name from synaptogenesis, the process of forming new synapses.
Synapses are the connections between neurons and the nervous system.
“We are a consulting group for small- and mid-sized CROs and, first and foremost, we are a patient advocacy group,” Harrison said. “We are a patient-powered business. We are going to change the industry so that every CRO and biotech company hires a rare disease patient to help them during development. We’re also going to offer a patient course so they (understand how to) contribute.
“The biggest obstacle for clinical trials is recruiting and retaining participants and completing the study,” he added, saying he wants Synaptigen to become CROs’ go-to resource in this effort.
The company’s four full-time employees, Jacob Venditti, Kenna McEvoy, Alexis Smith and Brendan Dowd, understand the mission well: They either have a disability or live with a disease. Venditti is the founder of the Live Fearlessly Foundation, which helps people with cystic fibrosis live a healthier, richer life.
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