A Personal Reminder of Why Connections Matter in Clinical Research
By Courtney Smith | Colpitts Clinical
I’ve worked in the clinical research industry for more than 13 years, and over that time I’ve had the opportunity to work with some pretty incredible people. I’ve always appreciated the role we play at Colpitts Clinical in helping patients and their families participate in clinical trials, but recently something happened in my personal life that gave me an entirely different perspective on the relationships I’ve built throughout my career.
I’m a mom of five, and like most parents, I’ve gotten to know plenty of other moms through school, sports, and everyday life. One of those friends is Alicia Smith Hoffman, whose son was diagnosed with Primrose syndrome, an extremely rare genetic disorder. When Alicia’s son was diagnosed, her priorities understandably changed. She left her job as a project manager and dedicated herself to learning everything she possibly could about his condition, researching potential treatments, and connecting with people who might be able to help. She essentially became an expert in a disease she’d probably never heard of before her son’s diagnosis, simply because she was determined to do everything she could to support him.
Eventually, though, Alicia found herself in a position that I think a lot of parents can relate to. She needed to return to work, but after spending so much time immersed in the rare disease community, she had developed a genuine passion for patient advocacy. She wanted to find a way to turn everything she’d learned and experienced into a career that would allow her to help other families navigating similar circumstances. Alicia knew generally what I did for work, although I don’t think she knew much about the specifics. She reached out one day to ask whether I happened to know anyone in the clinical research industry who might be able to offer some advice or guidance.
As soon as she explained what she was hoping to do, I thought of Terry Pirovolakis, the founder of Elpida Therapeutics.
I’d gotten to know Terry through my work at Colpitts, where we had arranged patient support services for one of Elpida’s clinical studies. Terry founded the company after his son, Michael, was diagnosed with SPG50, an ultra-rare genetic disorder. Like Alicia, Terry had found himself navigating a world of medical research and treatment development that he never expected to enter. His determination to help his son eventually led him to establish a company focused on developing treatments for children with rare diseases.
I remember thinking that, while Alicia and Terry’s experiences were certainly different, they had something SO important in common. They are both parents who had taken an incredibly difficult situation and turned it into a commitment to helping their children and, ultimately, other families.
I reached out to Terry and introduced the two of them, hoping he might have some advice for Alicia or perhaps know someone she could speak with about opportunities in patient advocacy.
Their conversation turned out to be far more valuable than I ever anticipated. Terry was incredibly generous with his time and knowledge. He shared his experiences, offered guidance, and even provided Alicia with contacts he’d developed at the FDA.
After their conversation, Alicia called me in tears and told me that I’d changed her life. I was genuinely taken aback by that. From my perspective, I hadn’t done anything particularly extraordinary. I’d simply thought of someone I knew through work who might be able to help a friend and made an introduction. But to Alicia, that connection meant so much more. She’d spent years advocating for her son and trying to figure out how she might build a career around something that had become so personally important to her. Suddenly, she had an opportunity to speak with someone who had navigated a similar experience and understood the challenges she was facing.
The whole experience has stayed with me, partly because of how much that conversation meant to Alicia, but also because it made me think about my own work a little differently.
At Colpitts Clinical, we spend our days focused on the practical side of clinical research. We help sponsors and CROs coordinate travel, accommodations, and other support services so that patients and their caregivers can participate in clinical trials with fewer logistical obstacles. We’re not developing the treatments or conducting the research, but we’re helping make participation possible for the people who need it.
Much of my own role is focused on building relationships with pharmaceutical and biotechnology companies, understanding their needs, and figuring out how we can support their studies. It’s easy to get caught up in the 9 to 5 business side of things, especially when you’re managing proposals, budgets, contracts, and all the other details that come with running clinical trials.
What happened with Alicia reminded me that the relationships we develop in this industry can have an impact that extends well beyond the work we’re doing together.
I knew Terry because of a clinical study. Alicia knew me because we are moms with mutual friends from the same town. Neither relationship had anything to do with the other until that phone call, and I certainly never expected that making an introduction would mean so much to someone.
As a mother, I have tremendous respect for parents like Alicia and Terry, who find themselves facing diagnoses they never imagined and somehow become advocates, researchers, and experts along the way. Their determination is remarkable, and I feel fortunate that my career has allowed me to cross paths with people doing this kind of work.
I don’t know exactly what the future holds for Alicia or where this new connection might lead, but I’m excited for her and grateful that I was able to play a small part in helping her move forward.
After more than a decade in clinical research, I still find new reasons to appreciate the people I’ve met and the work we do. This was one of those moments, and one I won’t soon forget.
Terry’s Story | Elpida Therapeutics
Learn more about Terry Pirovolakis and his family’s journey to advance gene therapy research following their son Michael’s diagnosis with SPG50, a rare genetic condition. Their determination helped inspire the creation of Elpida Therapeutics and its work toward developing treatments for rare diseases.
Visit Elpida Therapeutics
Beyond Primrose
Discover Beyond Primrose, an advocacy organization that brings together individuals and families affected by rare disease, including Alicia’s involvement in the community.
Learn More About Beyond Primrose
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