Journey of Hope Gala Honoree Spotlight: Dr. Suzanne Cassidy, MD

This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized at the event.

These honorees have shaped the Prader-Willi syndrome (PWS) landscape in profound and lasting ways – through groundbreaking research, tireless advocacy, compassionate care, and unwavering support for families and individuals living with PWS.

We hope you’ll join us in celebrating their legacies, and in person at our Journey of Hope Gala, happening Friday, September 26, 2025, at the Ritz-Carlton in St. Louis, MO. This will be a night to remember, filled with inspiration, gratitude, and a renewed commitment to the next 50 years of our mission.

Click here to learn more and to secure tickets.

Few individuals have shaped the Prader-Willi syndrome community as profoundly as Dr. Suzanne Cassidy. A true pioneer in both clinical care and research, Dr. Cassidy’s vision helped transform PWS from a rare, often misunderstood diagnosis into a global area of collaboration, discovery, and hope.

In the early 1990s, Dr. Cassidy recognized the need for international collaboration among scientists and researchers dedicated to PWS. She sought and received a grant from the North Atlantic Treaty Organization (NATO) to host an unprecedented conference that would bring together experts from around the globe.

With the help of then PWSA | USA Executive Director, Janalee Heinemann, she identified and contacted international colleagues, ultimately finding an enthusiastic host in the Netherlands.

In 1991, the first International Prader-Willi Syndrome Organisation (IPWSO) meeting convened, welcoming delegates from 17 countries across four continents. This groundbreaking event not only united researchers but also created space for families living with PWS to gather, learn, and share experiences. Dr. Cassidy became the first U.S. professional delegate to IPWSO, serving in this role until 2010 when she was elected President, an office she held for two terms. Today, IPWSO represents dozens of countries, fostering an international community of science, support, and advocacy.

Beyond her leadership on the world stage, Dr. Cassidy’s work has had a deeply personal impact. As director of the PWS Clinic at Genetic Medicine Central California, she provided expert, compassionate care to hundreds of families, many traveling from far outside the state to see her. Her patients consistently described her medical care, kindness, and understanding as exceptional.

For some families, her guidance shaped a lifetime of decisions and opportunities. Anne Fricke shares:

“I believe we owe quite a bit of Freya’s success to Dr. Cassidy. We received Freya’s diagnosis on a Friday evening via a phone call from her pediatrician. Dr. Cassidy called the next day and gave us a very important piece of advice, ‘keep Freya stimulated.’ She mentioned that babies with PWS were very easy to let be, but that a critical part of her development would be in interacting with her world. So, we set aside plain wooden rattles and bought brightly colored toys and a bouncy chair that played music. As with our first, we carried her most places, singing and telling her about the world. It would have been easy to take those longer breaks, to let Freya lie in peaceful quiet as we completed chores and necessary tasks. But if she was quiet for too long, left alone for more than was needed, I thought of Dr. Cassidy’s advice. I have carried this advice into Freya’s teenage years… Freya has danced in the streets of Oaxaca, hiked to the top of a 10,000-foot mountain, and kayaked down a scenic river in Northern California. Rather than give in to challenges and limitations, Freya is incredibly motivated to experience life as those around her without PWS do. Thanks to Dr. Cassidy’s advice, she learned at a very young age that life is meant to be stimulating. And that advice has made all the difference.”

Anne Fricke, Mom to Freya

Elaine Towle recalls meeting Dr. Cassidy in the mid-1980s, when information about PWS was scarce:

“My son was born in New Hampshire in 1986, long before we had information at the tip of our fingers. The geneticist at the Mary Hitchcock Memorial Hospital recognized the signs and symptoms of PWS and referred us to a specialist at the University of Connecticut, where we met Dr. Suzanne Cassidy. One of the very first pieces of helpful advice was when Dr. Cassidy recommended that we attend a regional PWS conference. My strongest memories are of the people we met, especially the older parents. Their children weren’t diagnosed until they were 19, 25 or 29 and were morbidly obese with many health issues. Those comments changed our thinking from ‘poor us’ to ‘we are so lucky that he was born when and where we live.’ I thank Dr. Cassidy for convincing us to attend that first conference. When our son was 5, I was prepared to argue that he couldn’t possibly really have this PWS thing. Dr. Cassidy calmly and gently reached into her desk and pulled out a recently published article that listed diagnostic criteria, and by the time we finished reading it, I knew she was right. Her demeanor is what is most memorable for me – she was calm, caring, and gentle. We left that visit with a new comfort level about our son's diagnosis and a renewed commitment to pushing forward to do everything we could to help him build a strong future. Thank you, Dr. Cassidy, for your part in our lives so many years ago.”

Elaine Towle, Mom to James

Dr. Cassidy’s influence extended far beyond the clinic. She chaired PWSA | USA’s Scientific Advisory Board, co-authored countless peer-reviewed studies, and developed critical advocacy and educational materials. She played a pivotal role in getting PWS included in medical school curricula and contributed to resources like the Physician’s Note Symptom and Treatment Checklist and the Social Security Administration’s Compassionate Allowances List.

Her accolades are extensive. She was named to Best Doctors in America by American Health Magazine, included in America’s Top Doctors for nearly a decade, and honored with the “Excellence in Human Genetics Education Award” from the American Society of Human Genetics. But those who know her best say that no list of awards can fully capture her warmth, humor, and dedication to the people she has served.

When she retired from practice in 2016, the PWS community felt her absence immediately. The Prader-Willi California Foundation (PWCF) honored her with its Lifetime of Excellence in Prader-Willi Syndrome Award, recognizing that her work will continue to shape care and research for decades to come.

Dr. Suzanne Cassidy’s legacy is one of vision, leadership, and unwavering compassion. Her life’s work has made the PWS world more connected, more informed, and more hopeful-and for that, we are deeply grateful.