Sara E. Izzo: Lived Experience Driving Research and Peer Support in Adult Spina Bifida Care

This article is part of a larger series of articles on the UPMC Adult Spina Bifida Clinic. Visit the series main article for links to other article in the series.”

Sara E. Izzo, BA, serves as the research coordinator for the UPMC Adult Spina Bifida Clinic’s participation in the National Spina Bifida Patient Registry (NSBPR) and as coordinator of the clinic’s Peer Navigation Program. Her dual role combines professional expertise and personal experience. Izzo also lives with spina bifida. This vantage point allows her to connect with patients in ways that are clinically informed and personally resonant.

“I’m ambulatory, so I don’t always fit the picture people have when they think of someone with spina bifida,” Izzo says. “But I’ve had multiple spinal surgeries, neurogenic issues, and orthopaedic reconstructions. Those experiences give me common ground with patients. I understand their frustrations because I’ve lived them.”

Building the National Spina Bifida Patient Registry

The NSBPR, funded by the U.S. Centers for Disease Control and Prevention, is a national data resource designed to improve care and outcomes. The UPMC Adult Spina Bifida Clinic joined the NSBPR in 2011 and now tracks more than 500 patients locally, spanning both UPMC Children’s Hospital of Pittsburgh and the adult clinic at UPMC Mercy Pavilion.

Izzo oversees patient consent, interviews, and data submission, and she is closely involved in registry-based research. One current project focuses on skin breakdown in patients to better its prevalence, causes, and relationship to sepsis and mortality.

“Our clinic has a lower rate of skin breakdown compared to many others, and that’s because our team takes a proactive approach,” Izzo says. “Just one or two days without proper care can set someone back tremendously. I know what that feels like and how something that seems small can quickly become a crisis.”

Izzo’s lived experience with spina bifida gives her an understanding of the barriers patients can face in following through with care plans, especially when cognitive or resource limitations are involved.

“I’ve been on the receiving end of complicated medical instructions,” Izzo says. “It’s one thing to know what you’re supposed to do, but having the support to actually do it is another matter entirely.”

From Data Manager to Peer Navigation Leader

Izzo’s early role in the UPMC Adult Spina Bifida Clinic as a data manager often brought her into direct patient contact.

“When I started interviewing people for the registry, it wasn’t just a set of questions. Patients would start sharing their struggles, and because I understood, it became therapeutic for both of us,” Izzo says.

In 2021, she and Monica Albert Still, BSN, RN, clinical nurse coordinator, launched the Peer Navigation Program, building on Izzo’s certification in peer support. The program provides one-on-one guidance and twice-monthly group sessions open to adults anywhere in the United States.

“I’ve met people from Texas, Virginia, and across Pennsylvania who I never would have connected with otherwise,” Izzo says. “When someone tells me they finally feel understood, I know we’re doing something important with the peer program we created.”

For many participants, the support the Peer Navigation Program provides includes practical help with job applications, budgeting finances, or figuring out how state vouchers can supplement their lifestyle.

“A lot of our patients have never lived outside their parents’ home. I’ve been there. I know what it’s like to navigate independence when the world isn’t built for you,” Izzo says.

Expanding In-Person Engagement and Removing Practical Barriers to Participation

The Peer Navigation Program began virtually after the COVID-19 pandemic, leveraging patients’ growing comfort with video visits and its ability to reach far beyond the geography of western Pennsylvania. The next phase of the program is meant to be physical and local.

“We have an accessible apartment and smart kitchen at UPMC Mercy Pavilion, and we want to bring patients in for adaptive cooking sessions,” Izzo says. “Access is a constant barrier, so the plan is to make it easy for paratransit or family to drop someone at the hospital, and then everything inside is set up for success,” Izzo says.

Beyond the kitchen, she and Still have plans to align new activities with the eight dimensions of wellness to address isolation, fitness, and community connection.

“We are looking at bowling, maybe even axe throwing as activities. Anything that gets people socially and physically active within their abilities is a good thing,” Izzo says. “For some, that first safe in-person experience becomes a bridge to more independence and confidence,” Izzo says.

The expansion to some in-person activities in the future is meant to be purely additive rather than replacement for the virtual peer sessions.

“The virtual groups stay because they work,” Izzo says. “We have regulars from Texas, Virginia, and Philadelphia who count on those sessions. Virtual opens a door that geography usually keeps shut,” Izzo says.

When Aging and Access for People With Spina Bifida Meet Systems That Are Not Ready

Adults with spina bifida are living longer, bringing into focus the same age-related conditions seen in the general population and the accessibility gaps that can block timely screening and treatment.

“When I was born, people with spina bifida did not often live into their 60s. Now we are seeing it,” Izzo says. “That means cancer, heart disease, all the same things everyone else faces but the equipment and facilities are not always accessible. Even a mammogram may be unusable if you cannot be positioned the way the machine works,” Izzo says.

Her perspective around living with spina bifida and aging is personal and current.

“I was recently diagnosed with two different types of breast cancer,” Izzo says. “I have had to fight for care that accommodates me, and that makes me even more determined to push for changes so others do not have to go through the same thing,” Izzo says.

The emotional burden in the spina bifida community is real and persistent.

“We are emotionally supporting a population that is losing people too soon, often from preventable causes,” Izzo says. “Peer navigation gives people a place to be seen, and it also gives us a way to keep an eye on practical issues, like skin care or supplies that, if missed, can spiral into a hospitalization or sometimes worse,” Izzo says.

Sustaining the Work

Another aspect of Izzo’s work at the UPMC Adult Spina Bifida Clinic is managing the Client Assistance Fund (CAF). The CAF is a Pennsylvania Department of Health–supported program that offsets essential out-of-pocket costs for spina bifida patients in need. She rebuilt the process how patients take advantage of the program to make it more user-friendly for individuals with cognitive or executive-function challenges.

“We created direct email and simple upload paths for receipts. Now we are reimbursing roughly twice what we did before, and next fiscal year we will get about $13,000 into patients’ hands, but we still run out because the need is larger than the available funds,” Izzo says.

Funding uncertainty remains a threat to continuity of services.

“The grant that supports the registry is not guaranteed, and our state dollars for peer navigation and assistance are not guaranteed,” Izzo says. “When that happens, it is not an abstract budget problem. It is someone losing the support that keeps them working, in school, or out of the hospital,” Izzo says.

She has also confronted new administrative hurdles that complicate access for patients.

“Some reimbursements are being treated like lottery winnings for tax purposes, which makes no sense for a needs-tested program,” Izzo says. “Those are the kinds of policy details that quietly undermine independence and that need to change,” Izzo says.

A Personal Mission Built on Lived Experience

Izzo’s clinical day is engineered to close loops.

“Often Monica is the first face a patient sees, and I am the last,” Izzo says. “I make sure nothing is unsaid or forgotten before they leave, and if something needs follow-up, I can carry it into a one-on-one peer session,” Izzo says.

The peer role is explicit and active, with assistance for things like job searches, résumés, budgeting, even building a simple spreadsheet so someone can track how state vouchers fit into their month. She is formalizing this aspect of her work in the clinic through graduate training.

“I am pursuing a master’s degree in counseling so I can bring a clinical perspective to the peer perspective,” Izzo says. “The data registry tells us where the problems are. Peer navigation lets us do something about them in someone’s real life in real time,” Izzo says.

Her school years presented additional challenges. Accessibility in education was not always consistent, and she had to advocate for accommodations to fully participate in academic and extracurricular activities. These experiences laid the foundation for a skill set she now considers essential for anyone living with spina bifida: self-advocacy. But it’s one that often has to be taught and practiced.

“From a young age, I had to figure out how to speak up, explain my needs, and make sure I was included,” Izzo says. “That carries over into adult life, especially in health care.”

Izzo believes that the future of spina bifida care depends on continued collaboration between providers, researchers, and the community itself. Peer mentorship is a critical component, not only for supporting individuals during transitions but also for encouraging greater independence and confidence across the lifespan.

“We have so much collective knowledge in the spina bifida community,” Izzo says. “Sharing that can change lives. It does change lives. We see it every day in our program.”