In a monumental display of generosity and community spirit, more than 250 supporters gathered in New York City for the Kabuki Syndrome Foundation’s third annual Quest for a Cure gala, raising more than $615,000 to advance life-changing research and bring treatments to our community faster.

Thanks to the incredible dedication of families, friends, and partners, the Kabuki Syndrome Foundation (KSF) is one step closer to achieving its mission: finding effective treatments and, ultimately, a cure for Kabuki syndrome.

Program Highlights: Honoring Advocacy and Hope

The evening began with heartfelt remarks from Annie Dean, KSF co-founder, and her son Walt, who shared their family’s journey with Kabuki syndrome and the powerful “why” that drives KSF’s mission forward. Annie reminded attendees that “a cure is within reach – you can help us get there.”

Annie and Walt honored Janet Lee, who served as KSF’s Executive Director for the past five years. Under Janet’s leadership, KSF raised more than $5.5 million, expanded its staff, and built the research infrastructure and strategy that define the Foundation’s work today. Janet was presented her award in recognition of her unwavering dedication to families and her continuing role as a member of KSF’s Board of Directors and strategic advisor. Janet shared:

“When Emily was 9, I attended the first-ever KSF research conference at Johns Hopkins. The focus was on a drug candidate that showed promise in treating the neurological effects of Kabuki syndrome. I did the math in my head and turned to my husband, full of hope, saying that by the time Emily was 13, we could have a treatment. Emily will be 17 in June, and we are still waiting.

Since that day, I’ve watched two potential treatments get deprioritized by pharmaceutical companies— one shelved indefinitely, the other sitting in a lab, waiting for funding to move forward. Families like mine quickly learn that the healthcare system isn’t built for us. And when the system falls short, we turn to science — only to discover that biotech and pharmaceutical companies rarely prioritize rare disease treatments. There aren’t enough patients to make a profit, so they move on.

And so, the burden falls on affected families — already stretched thin — to raise millions of dollars, find researchers, and build the partnerships needed to give our children a chance.

But if there’s one thing I’ve learned about rare-disease parents, it’s that we don’t give up.”

Dr. Jacqueline Harris, clinician and researcher as Associate Professor of Neurology, Pediatrics, and Genetics at Kennedy Krieger Institute and John Hopkins Medical Institute then took the stage. Dr. Harris spoke passionately about the impact of Kabuki syndrome on individuals and families, and the groundbreaking progress being made through the Kabuki Syndrome Consortium (KSOC). Her remarks underscored a clear message: the science is ready, and with continued funding, treatments are within reach.

Personal Stories of Progress and Impact

Community member Shannon Loftus then took the stage to introduce the evening’s final award presentation. Shannon spoke with grace and conviction about her personal journey living with Kabuki syndrome – and what progress means to those directly affected.

“Living with Kabuki syndrome has shaped my life in many ways. Like many others, I’ve faced obstacles that can make daily life harder—but I’ve also seen incredible progress in how doctors understand and care for us. That progress doesn’t happen by accident. It happens because of advocacy and research and because of families like you who make that research possible.”

Shannon described her own advocacy work, including participating in the international effort to update the Clinical Management Guidelines for Kabuki syndrome – a vital step toward improving care and empowering families around the world. “These guidelines will provide clear and consistent recommendations to healthcare providers and serve as a critical resource for families navigating complex medical needs,” she explained.

She concluded by honoring the night’s second award recipients: The Cingari Family, whose generosity and commitment continue to transform what’s possible for people with Kabuki syndrome.

Tom and Jenna Cingari accepted the award on behalf of the Cingari Family, expressing gratitude for the community’s trust and reaffirming their shared commitment to advancing treatments and improving lives.

Guests were then invited to experience the heart of KSF’s mission through a short film, featuring families, researchers, and members of the KSF team. You, too, can get a behind-the-scenes look at the passion, progress, and purpose that drive KSF. Watch now.

The excitement continued with a live auction and paddle raise led by the incomparable Lydia Fenet, whose energy and enthusiasm helped drive generous bidding in support of research.

Join this amazing community by making a donation today.

With Gratitude to Our Community and Team

Our deepest gratitude goes out to everyone who made this unforgettable night possible: our guests, supporters near and far, and the many families who joined us and shared their stories.

We were honored to welcome several researchers/clinicians including Dr. Jacqueline Harris, Dr. Hans Bjornsson, and Dr. Brittany Simpson, who went above and beyond to spend time connecting with families and sharing updates from the lab.

Special thanks to our incredible volunteers: Corrinne, Emma, Ryan, Emily, and Pascal, whose behind-the-scenes efforts ensured a seamless evening.

We also extend appreciation to Samantha at Sterling Design and The Lighthouse event staff for their creativity, professionalism, and partnership in bringing the event to life.

Thank You to Our Hosts & Sponsors

We are deeply grateful to our generous sponsors for making this evening possible and for believing in a brighter future for those living with Kabuki syndrome.

Thank you to our generous local hosts: Tom Cingari Jr., Annie Dean & Peter Zaitzeff, Janet Lee, and Stephanie Manning.

Thank you to our sponsors:

Silver

Annie Dean & Peter Zaitzeff

The Cingari Family

Bronze

The Lerer Family Foundation

PJT Partners

Vangst & PIKL

Dimension Capital Management

Joey Aerin Cohen Fan Club

Cantor Fitzgerald

Friends & Family

James and Cynthia Fitzgerald

The Gunn Family

Michael O’Grady

Thank you to our auction donors:

Agatha Capacchione & Ryan Hardy

Cantor Fitzgerald

GIII – Donna Karan

Marsha Starr

Ritz-Carlton Lake Tahoe

The Chaix Family

The Levy Family

The Waller Family

Together, we are changing what’s possible for people with Kabuki syndrome—advancing nine potential treatments in development and laying the groundwork for the first clinical trials.

A cure is within reach—thank you for helping us get there.

Enjoy this preview of photos from the evening, and stay tuned for more!