The article below reflects the personal opinions of the author(s) and does not reflect the views or opinions of the Perspectives editors or committee, or the National Society of Genetic Counselors (NSGC).
Recently, I reached my 14th anniversary at Parent Project Muscular Dystrophy (PPMD), a rare disease advocacy organization focused solely on Duchenne and Becker muscular dystrophy. I have been reflecting on how much has changed both personally and professionally during this time. Not only have my sweet babies grown into fearless teenagers, but my initial part-time position has blossomed into a vice president position leading a team of four full-time genetic counselors. This may not seem like many genetic counselors if you work in a hospital or laboratory setting, but trust me when I say it is a large number for a small advocacy organization!
The Journey to a Fully Staffed Genetic Counselor Team
The first genetic counselor was hired at PPMD in 2009, and she in turn hired me in 2011 to work as a part-time registry curator. Although initially my position was focused solely on the registry, I was quickly pulled into multiple other projects. Together, we demonstrated the versatility of our degrees and training. As at any nonprofit organization, funding is always a challenge, but we found creative ways to bring in additional funding that helped transition my position to full-time and hire additional genetic counselor positions. This funding initially came from grants and industry-supported initiatives, but now our positions are stable and not dependent on funding from temporary projects. Remarkably, this remained true even through the COVID pandemic.
Many people have asked me why PPMD came to employ so many genetic counselors over the years. I do not have a simple answer to this question because it developed organically over time, but I can say that the leaders at PPMD have consistently been impressed with the strong skill set, knowledge base, work ethic and passion that genetic counselors bring to the table. Whenever we have had funding to hire a new team member, I have always suggested a genetic counselor without hesitation. We have a unique combination of skills and empathy which together make us ideal candidates for positions in the nonprofit and advocacy sector. Admittedly, I have also taken charge of the hiring process, which I think my colleagues were more than happy to relinquish, and NSGC has made the process of finding interested genetic counselors very easy with the NSGC Career Center.
The Role of a Genetic Counselor at an Advocacy Organization
You may wonder what genetic counselors working in an advocacy organization do on a daily basis. I can be the first to attest that the tasks are varied, and many are ones I would have never imagined taking on as a genetic counselor. However, they have all been learning opportunities that have only broadened my skill set.
Some of the projects that genetic counselors have been or are currently involved in at PPMD include providing community support and education; curating and managing The Duchenne Registry; coordinating Decode Duchenne, a sponsored genetic testing program; leading a newborn screening initiative to add Duchenne to the Recommended Uniform Screening Panel (RUSP); advocating for Duchenne at the state and federal levels; writing educational, family-friendly web and print content; leading or assisting with a variety of research projects; presenting and exhibiting at professional conferences and promoting PPMDs programs and mission; and mentoring genetic counseling graduate students.
A Perfect Opportunity
At PPMD, we have been fortunate to have a phenomenal leader in the rare disease space – Patricia Furlong. Pat started PPMD over 30 years ago after losing both of her sons to Duchenne, and she continues to lead the organization today. When I asked Pat about genetic counselors working in advocacy, she stated, “It’s a perfect marriage. I want team members who have a deep understanding of Duchenne as well as dedication to our mission and goals. Genetic counselors have the desired skill set and have compassion and respect for the families we serve. I have never regretted hiring a genetic counselor.”
The 2024 NSGC Professional Status Survey did not list advocacy organizations as an employer work setting, but 72 genetic counselors (3%) selected “nonprofit organization – other” as their employer work setting. For those genetic counselors who identified as self-employed, 10 (12%) selected working in advocacy. I think that more advocacy organizations could absolutely benefit from incorporating genetic counselors into their workforce. Likewise, genetic counselors looking for a new opportunity outside of the more traditional clinic or laboratory settings should consider advocacy organizations. There are hundreds of rare disease advocacy organizations (see a full list at NORD). They may not have a genetic counselor position listed in their job opportunities, but there may be a position that would match our skill set. Also, you may have to begin with contract or part-time work, but keep an open mind and be flexible. I believe the possibilities are endless!
Image by Alexa from Pixabay
Ann Martin, MS, CGC is the VP of community research and genetic services at Parent Project Muscular Dystrophy (PPMD), where she manages a team of genetic counselors who coordinate all aspects of The Duchenne Registry and the Decode Duchenne genetic testing program. Ann represents The Duchenne Registry on TREAT-NMD’s Global Data Oversight Committee and serves as the DMD Subgroup Co-Lead. Before joining PPMD, Ann worked for 15 years at Carolinas Medical Center where she provided genetic counseling for a wide range of prenatal, pediatric and adult patients. Ann is a graduate of the University of Cincinnati Genetic Counseling Graduate Program.