Hope in action for Prader-Willi syndrome research

In medicine there are those whose passion and dedication offer rays of hope to patients and their families. In the field of pediatric endocrinology, Jennifer Miller, M.D., the director of the UF Health Prader-Willi syndrome (PWS) program, shines brightly as an inspiration for many.

Driven by a desire to understand the impact of obesity on brain development and cognition, Miller embarked on a path that would lead her to the center of PWS research and patient care.

Jennifer Miller, M.D.

Miller started working with PWS patients when she was a fellow researching childhood obesity. She noted that at the time, everybody with PWS developed childhood obesity.

She was inspired by a patient whose moving words, “Imagine the hungriest you’ve ever been. That’s what I feel all the time,” painted a vivid picture of the constant struggles faced by those with PWS.

“My passion for treating this disorder arose because right now, people with PWS can never live independently because of the food,” Miller said. “They’re constantly hungry, and they have to be watched 24/7. It just broke my heart to see the adults who would say, ‘If I didn’t have this, I would have done this.’ So that’s why I’m so passionate about finding a treatment.”

With over two decades of experience specializing in the care and treatment of individuals with PWS and other genetic causes of early-onset excessive weight gain, Miller’s calling is one of compassion, resilience and unwavering commitment.

Alongside a multidisciplinary team at UF Health, Miller is leading the way, providing comprehensive care to address the full range of needs of individuals with PWS. The team includes experts in endocrinology, genetics, speech and language pathology, pulmonology, sleep medicine, and nutrition, she says, highlighting their commitment to holistic care.

At the heart of Miller’s approach lies a deep connection with her patients and their families. From knowing their names to understanding their interests and concerns, she creates an environment of trust and understanding, ensuring that every child and their family feels valued and supported.

“We’re here to support you, to guide you, and to help you thrive,” Miller said.

Running for Research (RFR) originated from a strong doctor-patient relationship. During a routine appointment with Miller, the conversation turned to PWS research and its many promising opportunities. Due to a perpetual lack of research funding, many breakthroughs remain undiscovered. RFR is a fundraising program dedicated to bringing awareness and support to research focused on this rare genetic disorder. 

Through efforts like RFR, Miller and her team continue to push the boundaries of PWS research and treatment.

“It’s research that directly impacts patients on a day-to-day basis,” she explains. “All the money raised goes directly to research, offering hope for better treatments and improved outcomes.”

For PWS patients and their families, hope is a powerful force. Miller’s unwavering dedication and optimism serve as an inspiration for patients and families alike.

“We can give them hope,” Dr. Miller said. “We can provide the tools and support they need to lead fulfilling lives, despite the challenges posed by PWS.”

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