Genetic Counselor Singles Out Tenacity, Resilience, and Willingness to Volunteer as the Keys to Succeeding in Her STEM Education and Career
Jennifer DiRaimo has dedicated her life to helping patients understand conditions that impact them or their family members. First, as a genetic counselor she assisted individuals and their families to better understand the risks and the consequences of testing for genetic conditions – and to make informed decisions about their personal approaches to healthcare. She did that as a certified clinical health care provider specializing in newborn screening, metabolics, and cancer genetics.
Now, DiRaimo is Director of Research and Canadian Advocacy at the Platelet Disorder Support Association, where she is passionate about improving the lives of those with immune thrombocytopenia (ITP) and other platelet disorders. DiRaimo does that not by offering genetic counseling, but by working with the organization to help educate patients and families to be better informed about the disease, its implications, and potential treatments.
Earlier this month, she provided Sandra Lee Heyman Foundation Fellows with insights about genetic counseling, conveying her excitement about the impact it can have as well as the field’s many challenges. She also discussed the role of health-related associations in providing vital information to patients and providers alike, including sharing her experiences as a caregiver to her son with ITP. The session was especially relevant since Sandra Heyman, for whom the fellowships are named, passed away due to ITP in 1998.
With an honors BS in Biology and Physical Anthropology and an MS in genetic counseling, DiRaimo’s career also includes chairing a research grant program through the Canadian Association of Genetic Counsellors (CAGC). Besides participating actively in CAGC, DiRaimo sits on the board of the Network for Rare Blood Disorders Organization (NRBDO) and is a member of the Canadian Blood Services (CBS) Patient Engagement Panel.
DiRaimo explained that a genetic counselor is not a medical doctor, but rather a professional who works with healthcare providers to evaluate genetic conditions, provide psychosocial counseling, and discuss genetic testing. “When I started, most genetic counselors would just work in a hospital setting. Now there are genetic counselors that work in research within labs or who teach and do a whole variety of different things. As the opportunities expand, so does the need for genetic counseling.” And that is happening rapidly, she told the fellows.
Responding to a fellow’s question about what her typical day as a genetic counselor was like, DiRaimo described a day involving counseling patients, sometimes writing up interesting cases seen within the genetic team, and communicating results. Regardless of where the work is done, collaboration with other health care specialists is the norm.
Family backgrounds affect the career choices of many, and Jennifer's interest in genetics was sparked by her family history with Huntington's disease – a fatal, inherited neurodegenerative disorder that causes the progressive breakdown of nerve cells in the brain, leading to movement, cognitive, and psychiatric problems. Fearful of getting HD, and later learning through genetic testing she is not at risk to develop the disorder, it made her realize the importance of genetic counseling. “It made me aware of the profession of genetic counseling. When I learned about genetics in high school, I just thought, this is fantastic. I cannot believe people can get paid to do genetics, and I loved it so much from the get-go,” she said. That initial interest led DiRaimo to major in biology and physical anthropology at Trent University in Peterborough, Ontario, which had a strong focus on genetics.
Just before graduating, DiRaimo learned that her four years of courses would not be enough to assure her path forward as a genetic counselor. She advised, “This is something that everyone should really focus on. When you want to go into a specific graduate program, not only are there academic requirements, but there are a lot of times volunteer conditions, or expectations that you have some kind of lived experience in the area that you want to learn more about.” DiRaimo chose to stay an extra year, volunteering at Mount Sinai Hospital in Toronto to gain experience in the field, before completing her undergraduate degree.
And then came rejection. She was turned down for admission to what were very competitive graduate programs in genetic counseling. But DiRaimo persisted. She urged the fellows, “Never give up. I could have easily given up and walked away at that point, but it made me want to work harder. I got feedback from the places that interviewed and didn't accept me but put me on their wait list.” DiRaimo took the initiative and inquired what she could have done differently and learned about courses that “weren’t anywhere in the requirements for graduate school” but were a preference. She reapplied the following year, earning acceptance into several programs and selecting Brandeis University in Massachusetts.
During her graduate studies, DiRaimo interned at a variety of clinics addressing prenatal, cancer, and metabolic issues. After receiving her master’s degree, DiRaimo worked primarily at one hospital in a general genetics clinic for 14-plus years, participating in research, teaching, and counseling thousands of patients confronting a host of potential and actual genetic conditions.
What came next was unexpected and extraordinarily difficult: DiRaimo’s son passed away from an autoimmune blood disorder, ITP, where platelets in the bloodstream are attacked, creating a risk for bleeding. She told the fellows that returning to work at the very hospital setting where her son had been treated would be triggering for her, leading DiRaimo to take a position with the Platelet Disorder Support Association, an organization that she had become acquainted with during her son’s battle with ITP.
DiRaimo stressed that making that job switch highlighted the importance of being personally resilient and made her realize that certain skills picked up during graduate studies can be very transferable during a career. “When you embark on a graduate program, you really learn so much more than you think. You have skills that are transferable and that you have leadership skills. You have management skills that you didn't even realize that you had, but they're just all part and parcel of your graduate program. You can bring that wherever you go,” she told the fellows.
DiRaimo described the rich variety of opportunities for those with a STEM background to work in non-profit organizations, particularly in education and research. She highlighted the varied roles that these associations play, especially in translating complex scientific information for patients and the general public – and in educating healthcare providers. That includes summarizing research findings so that they are more accessible to broader audiences. “There are a lot of opportunities for people in science to do things outside of the box and to get involved, even volunteering with nonprofits,” she said. That volunteer work really matters, DiRaimo told the fellows. So does taking advantage of internships, along with networking and lifelong learning to keep up with scientific and technological advances.
When asked by one of the fellows what characteristics have helped her to succeed, DiRaimo responded, “I think tenacity has helped, having a drive and following through with it and never stopping. There will always be walls that will be put up wherever you go, and it is so important to just not let them stop you and to keep going. That has been something that has allowed me to be successful.”
As for what lies ahead for the field of genetic counseling, DiRaimo pointed to the rapid technical advances in identifying genes tied to specific diseases. She also specifically highlighted the potential that artificial intelligence (AI) has of greatly aiding genetic counselors by reducing administrative burdens, allowing them to focus more on patient care.
In terms of her own future, DiRaimo told the fellows, “I think that learning is a lifelong thing. Before I retire, I would love to pursue a PhD. When you love to learn, you don't have to worry about your age. You just have to keep on learning and living.”
The Sandra Lee Heyman Foundation is a 501(c)(3) nonprofit organization established in memory of Sandra Lee Heyman, a long-time mathematics teacher at the elementary, middle school, high school, and community college levels. The 18-month long Fellowship is aimed at promising high school students who have the opportunity to meet with STEM leaders, visit prominent institutions in the Washington, D.C., area, and access peers and mentors to support career exploration in STEM fields. There are multiple ways to support the Fellowship program, and donations to the Foundation are tax deductible.