Jessica Shurer, MSW ‘12, is a licensed clinical social worker and the director of clinical affairs and advocacy of CurePSP, a nonprofit organization based in New York dedicated to the awareness, care and cure of neurodegenerative diseases. Prior to her role with CurePSP, Shurer served as the center coordinator and clinical social worker of the Parkinson’s Foundation Center of Excellence and CurePSP Center of Care at the UNC Movement Disorders Center. There, she became very specialized in Parkinson’s disease and in what is clinically referred to as “atypical parkinsonism” diagnoses, which are progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA). These are the diseases that CurePSP serves.
In our latest alumni Q&A, Shurer speaks about her work and how her education from UNC’s School of Social Work guided her transition from the clinical environment to the nonprofit world.
Q: Explain your role and responsibilities with CurePSP and what you love about your work.
A: I have been with the organization since October 2021 and oversee our services aimed at increasing and improving care, support, education and awareness of these three brain diseases. This includes our support groups, peer support network and all educational resources. A large part of my role is the management of our Centers of Care program, a network of 28 medical centers across the United States and Canada dedicated to the comprehensive care of PSP, CBD and MSA. Additionally, my team collaborates with our events and marketing teams to develop programs and campaigns. I also work closely with our executive director on strategic planning for our clinical care- and community-oriented initiatives under our mission.
I want to provide a little background on the life-limited diseases we support. While there can be overlap in some symptoms as Parkinson’s disease, unlike Parkinson’s, PSP, CBD and MSA are rare, symptoms progress quickly, medications are not as effective, and few specialized resources are available. As a result, these diseases have very complicated care considerations, require a lot of family support, and necessitate a palliative approach to care. I have found that social workers can play a very important role in supporting the complex and unique challenges and needs of this patient population.
I am fortunate to have great variety, flexibility and support in my job at CurePSP. I’m in a relatively unique situation where I transitioned from a primarily clinical role, serving a very niche community, to a primarily macro role, serving that same niche community. I love that about my job. After almost a decade of working directly with people living with these diagnoses and their families, I now get to translate what they’ve taught me and the needs of this community that I witnessed first-hand, into CurePSP’s work on a national level.
Q. What led to your initial interest in neurodegenerative diseases, and did that interest influence your decision to pursue an MSW with UNC’s School of Social Work? If so, how?
A: I was in high school when I discovered my passion for geriatrics, dementia, and end-of-life care. I was very close with my grandmother, who was in her late 80s at the time, and I started volunteering at a Veteran’s Affairs nursing home. At the nursing home, I was assigned to two WWII veterans and one Vietnam veteran. One of them had Alzheimer’s, one had Parkinson’s and one had schizophrenia. I was their companions, and they became mine. Something about being around them and in that setting just felt comfortable to me. I loved that they had lived this whole life, full of memories and lessons learned.
I went to college knowing I wanted to do something in this field but unsure of what that was exactly. At Penn State, I pursued a bachelor’s degree in psychology, with minors in gerontology and human development and family studies. I also tried to get in as much extracurricular, hands-on experience as I could. I volunteered in adult day care centers and long-term care communities, and I worked as a research assistant in the lab of Dr. Steven Zarit, an acclaimed researcher in dementia caregiving.
I took off the year after college to live with my mom and work as a professional in-home caregiver. I worked with people with neurodegenerative diseases, people with cancer, and older adults without health issues. I was moved by and learned from every story, every life lived. I also increasingly realized the prevalence of ageism in our society, resulting in the marginalization of older adults, stigmatization of the experiences of aging and dying, and the lack of resources and infrastructure to support older adults, people at end of life and family caregivers. It bothered the heck of me, but I did not know what I could do. Fortunately, my mom introduced me to a professional acquaintance of hers who happened to be a social worker at a retirement community. She told me about the values of the social work profession and her role as a geriatric social worker. I felt like finally, someone got it, and I knew that was exactly what I wanted to do. I researched the best MSW programs and applied to UNC. I remember clearly standing alone in my mom’s driveway and holding a letter that had “Going to Carolina in my mind…” written across the top. It changed my life.
Q. How did your social work education and experience as a student help to further refine the problems you wanted to solve or the people you wanted to work with in your profession?
A: When I was in the MSW program, I recall hearing time and again that most social work jobs are some kind of combination of clinical and macro work. Despite having to ultimately choose one track over the other (I went the clinical route), I kept this in mind. I knew I had an affinity for both. I loved working directly with individuals, families and in small groups, but I was also quite good at coordination and program planning and wanted to address bigger picture issues. In school, I learned how I can and likely will do a bit of both, and I leaned into that.
Additionally, I am grateful for the mentorship of Denisé Dews, who I was lucky to have as a professor and field advisor. She saw my passion and supported me through my time at UNC and has continued to do so in the decade since my graduation. Her classes in older adult theory and practice and care of the dying and bereaved provided me with the theoretical framework I needed to successfully launch a career in social work focused on older adults, chronic illness and end-of-life care.
Q: What’s the most important professional lesson you’ve learned since graduating?
A: I’ve learned the full extent of my own value as a social worker. Despite a general movement toward integrated and patient-centered care, medicine is still largely a hierarchy, and that hierarchy also exists within a society that still does not fully understand what social workers do. For a while, I accepted that as the norm. I accepted speaking last in team meetings (usually while co-workers were ready to head out the door), having a salary that was significantly less than my friends with master’s degrees in other fields because I had been told ‘We don’t go into social work to make money,’ and seeing little to no recognition of social work in neurology literature and conferences. Somewhere along the line, I stopped accepting these things. I realized that as social workers, we cannot advocate for those we serve without also doing it for ourselves. Perhaps my social work friends and colleagues developed this awareness earlier, but for me, it took first-hand experience of a boots-on-the-ground social work role for me to finally see not only what I bring to the table but how I needed to intentionally create a seat at the table so others in medicine and beyond could truly recognize my worth.
Now, I put myself out there and present at conferences, author papers/books/posters, serve on committees, and get involved in national initiatives. I do so because it’s important that the social worker’s perspective is represented in spaces dedicated to patient care.
Q: Why are social workers an asset to nonprofits that focus on healthcare, palliative and end-of-life care and education, such as CurePSP?
A: Evidence-based practice, community needs assessment and awareness of the intersection of systems are both cornerstones of the social work profession and foundational to nonprofit work. We bring a social justice lens to care and advocacy, which is critical when it comes to pursuing change and a mission of improving systems and lives. This approach complements the expertise of other professionals in nonprofits.
In my area of work, I feel that my social work background has provided me with a heightened awareness of both the vulnerability and resilience of chronic and life-limiting illness, of aging, of dying, and of living in general. I also listen to my community when they turn to us as a nonprofit following a diagnosis and in search of hope and empowerment. My social work values help me to recognize the strength and the dignity in that, and then I use that to foster collaborations and build programs that can positively shape our organization and impact those we serve on a larger scale.
Q: Is there anything else you’d like to add about your role and how your social work education continues to guide you daily?
A. We are working toward a cure for these neurodegenerative diseases (our name after all is “CurePSP”), but we also want to make sure we are doing everything we can to care for and uplift those living with them now. My social work education, values and experiences have guided and energized me in my role here and make up the foundation for my dynamic and successful career across the clinical sphere and now into the macro one.