A Brilliant Night for RARE Hope Fills the National Cathedral With Inspiration, Generosity, and Breakthrough Momentum
On November 13, 500 guests gathered beneath the soaring arches of the Washington National Cathedral for A Brilliant Night for RARE Hope, the organization’s second-ever gala and a black-tie evening devoted to celebrating progress, honoring science, and helping to change the future for children living with rare neurological diseases.
ABC News Chief White House Correspondent Mary Bruce served as the evening’s emcee, lending warmth, clarity, and a sense of purpose to a night that brought together patient families, dozens of leading scientists from around the world, and a generous, exceptionally engaged Washington audience.
A Mother’s Story
One of the night’s most powerful moments came from patient parent Mary Saladino, who shared her family’s journey with her 5-year-old son, Henry, who suffers from severe symptoms and life-threatening seizures due to his neurological condition, Alternating Hemiplegia of Childhood (AHC). Mary described the terror of Henry’s first seizure at five weeks old, the repeated fear of losing him, and the moment a genetic counselor told her there was “nothing you can do.”
Finding RARE Hope changed that trajectory. Through the structure the organization built — connecting families directly to leading scientists and a growing portfolio of therapeutic strategies — Henry is now just months away from the first treatment ever for AHC. Saladino credited RARE Hope with transforming her family’s fear into a path toward survival, saying the organization “equipped us” so the “path we carve for Henry can become a road for many families.”
Advancing New Frontiers
The program continued with reflections from leading researchers. Dr. Al George of Northwestern University described RARE Hope as “not just another charity — it’s a catalyst,” noting that the organization “was built the way an investment banker builds a portfolio — strategically, intelligently, always looking for gaps and finding ways to fill them.” He emphasized that rare diseases, taken together, affect hundreds of millions of people worldwide, and that breakthroughs in these areas have the power to transform medicine far beyond any single condition. “For the first time in my scientific career,” he said, “I feel comfortable using the word ‘cure.’”
The evening’s momentum grew with a major announcement from Dr. Winston Yan of the Broad Institute, who unveiled plans for a new Center for Genetic Surgery — a multi-institutional effort to accelerate the creation of precise, personalized genetic medicines and build towards a sustainable new pathway of treatment for rare disease patients worldwide. Yan emphasized that RARE Hope has been a key catalyst in standing up this center, helping to advance the scalable architecture behind a new era of programmable genetic interventions. The organization, he said, is “a trailblazer” in building the systems required to move genetic treatments from vision to reality.
The Founders’ Vision
Simon and Nina Frost reflected on RARE Hope’s growth since its first gala six years ago, crediting the extraordinary team of scientists, patients, and volunteers who “turn vision into hope and hope into progress.” Those early donations, Simon noted, became the seed capital for an engine now driving breakthrough science — “we stretched your donations, we compounded them, and we multiplied their impact many times over.”
Nina distilled the organization’s ethos simply: “Hope isn’t wishful thinking — hope is about action,” she said. “This conviction lies at the heart of RARE Hope.”
A Community United
The program also featured a spirited live auction led by auctioneer Keith McLean, with once-in-a-lifetime experiences in Iceland, Italy, the French Alps, Vail, Catalonia, Nantucket, and a grand tour across London, Versailles, and Paris. Guests then moved into the Fund-A-Need appeal, where Mary Bruce reminded the room that every dollar raised from that point forward would accelerate new studies, new therapies, and new hope for the more than 30 million Americans living with rare diseases.
By the end of the evening, A Brilliant Night for RARE Hope had filled the Cathedral not just with music and conversation but with a clear sense of shared purpose. The generosity and belief shown at the Cathedral will move directly into expanding RARE Hope’s research portfolio, deepening scientific partnerships, and pushing the next wave of therapies toward the children and families who need them most.
Event co-chair Sogand Zamani said, “Nina and Simon have built something truly unique in the world of scientific research — a hub connecting patients and scientists directly, and an approach to research at scale. We are so lucky that our remarkable community rallied around RARE Hope for their second gala and to propel their work forward.”
Dr. Tim Yu, of Boston Children’s Hospital, Harvard University, and the Broad Institute, called it “such a magnificent celebration at the National Cathedral, honoring the entire rare disease community and the hopeful work being done.” Yu was among the more than 30 researchers and clinicians who traveled to support the event.
Event co-chair and RARE Hope board member Mary Margaret Plumridge captured the spirit of the evening: “We are so fortunate to have such smart, sophisticated, and empathetic supporters. We are thrilled with the event’s success — and what an inspiring and fabulous night.”
RARE Hope extends its deepest gratitude to everyone who made the night extraordinary.
