SYNGAP1 families were at the center of Beacon of Hope, reminding us all why this fight matters.
Pictured: Emily Barnes, Suzanne Jones, Chelsey and Anthony Navarro, Kathryn Helde, Peter Halliburton, Mike Graglia, Heather Mestemaker; Other SYNGAP1 families in attendance: Tavillas (Tina McGlashing, Angela McGlashing, Sandy Smith), Kathy Langen, George Lynch, Kim and Steve Gore.
The event may be over, but donations are still accepted to help advance SYNGAP1 research at cureSYNGAP1.org/Beacon25.
On September 12th, 2025, the Fairmont Copley Plaza glowed with music, laughter, and generosity as more than 170 guests came together for Beacon of Hope: A Benefit for SYNGAP1. Families, friends, and SYNGAP1 supporters filled the ballroom alongside leaders from Boston Children’s Hospital, Massachusetts General, and representatives from biopharma organizations including CAMP4 Therapeutics, Praxis Precision Medicines, Beacon Biosignals, Ambry Genetics, Unravel Biosciences, Axonis Therapeutics, Quiver Bioscience, and Endicott College. It was a night that was so much more than a gala—it was a night where hope itself took center stage.
The evening began with a reception and silent auction. Attendees from the Boston area and those visiting from out of town had the opportunity to mingle and get to know each other. Local SYNGAP1 families connected over cocktails served from a hidden prohibition bar, seeing each other for the first time since the Tavilla’s 2025 Sprint4Syngap event honoring Myla and other local Syngapians. Guests and bidders at home had the opportunity to browse in-person or electronically over 70 items on display for silent auction including several pieces of art, jewelry, experiences, and trips.
From a $10,000 luxury safari credit from Nziza Hospitality and Caribbean resort stays from Elite Island Resorts, to handcrafted ceramics by local artist Katie McColgan and breathtaking ocean photography by Steven Koppel, the silent auction truly offered something for everyone. Boston sports fans vied for memorabilia signed by legends like Ted Williams and Charlie McAvoy, while others were drawn to unique treasures like a handcrafted wooden charcuterie board, a 14k gold starburst diamond pendant, The Capital Grille and Flour Bakery + Cafe gift cards, and more. Thanks to this incredible mix of generosity and creativity, the auction raised over $18,000, bringing us closer to treatments and a cure for SYNGAP1.
As the reception came to a close, the doors to the ballroom opened, and the evening’s program began. Guests were led from the Fairmont’s Venetian Room to the Oval Room where a 1920’s-theme jazz band by Louis Pettinelli Entertainment was in full swing. The room was filled with ‘20’s themed tables decorated by Picnics & Pillows with elegant feather centerpieces, SYNGAP1 purple votive candles, and gold foil playing cards for a unique speakeasy touch.
In lieu of table numbers, each table was named after a Syngapian. To add this detail, SYNGAP1 parents were asked to provide a photo of their child, list some fun facts about them, and, most importantly, describe what a cure for SYNGAP1 would mean for their family. One of our favorites was Table Jack:
“Jack (age 5) was diagnosed at age 3. He loves splashing in his water table, riding horses, and anything with movement. A cure for SYNGAP1 would mean a world where Jack no longer has to live in silence, where his sister can play with him instead of being a caretaker, and where public outings don’t end in stares, screams, and tears.”
The evening program began with an introduction by co-chairs Anthony and Chelsey Navarro who welcomed guests, expressed gratitude for their attendance, and recognized the hospitals and biopharma partners in the room before introducing Dr. Yuri Maricich, MD (Chief Medical Officer at CAMP4 Therapeutics).
Dr. Maricich honored SYNGAP1 families by calling parents “heroes” for the love and perseverance they show every day and credited years of SRF-funded research for laying the groundwork that made CAMP4’s progress possible. Laying the foundation for an evening centered on hope, he explained that their approach is the first designed specifically for SYNGAP1. Specifically, CAMP4 is aiming not to just mask SYNGAP1 symptoms, but to treat the root cause by increasing SYNGAP1 protein. Yuri also spoke about the values that will carry this work forward: the value of every child, the hope that science is now delivering, the humility and trust between families and researchers, and the teamwork and perseverance that make progress possible. Most powerfully, he shared that CAMP4 had just announced an oversubscribed $100 million raise to accelerate their program into clinical trials expected to begin in 2026. For families in the room, his words transformed possibility into tangible hope.
After dinner, music, and lively conversation, auctioneer Tom Stebbins took the stage to auction off three incredible items: a St. Augustine beachside vacation for six complete with zoo and dolphin adventures, historic tours, and dining experiences; an exclusive dinner for six prepared by Jayson Tatum’s private chef, Trenita Coleman, paired with flowers, wine, and luxury touches; and, to everyone’s surprise, not one, but two, AmaWaterways European river cruises for a week, redeemable in 2025 or 2026.
The room buzzed as bids climbed higher. Each of the donors behind the three live auction items was there to witness the moment: Chef Trenita Coleman, who donated the private chef experience; George Lynch, a proud SYNGAP1 grandfather, who donated the St. Augustine beachside stay; and LabNomads LLC, who coordinated the AmaWaterways river cruises. Together, these incredible donated experiences brought in $19,000 for SYNGAP1 during the live auction. Tom then announced that SRF’s own Heather Mestemaker won the coveted “Beacon Bonus,” an opportunity to purchase blinky rings and win two overnight stays at the Fairmont Copley Plaza and an exclusive Boston Red Sox experience (in-season game, behind-the-scenes tour, and more) for four. It was a fun and friendly competition that netted nearly $5,000!
Following the auction, SRF founder and CEO Mike Graglia took the stage. He shared his personal journey as a parent to his son Tony, and the story behind starting the SynGAP Research Fund. But most powerfully, Mike brought forth the voices of every SYNGAP1 family represented in the room. He spoke of Myla, who hurts herself when she is overwhelmed because she cannot yet speak to express herself. He told of Hadley, who often feels too scared or distressed to participate in daily activities other children enjoy. He described Carter, whose little sister is now developmentally surpassing him and essentially becoming his “big” little sister, and Harper, whose family grieves the milestones she may never reach. He reminded us of Thomas’s daily challenges with behaviors that can overwhelm both him and those around him, of Jansen’s family navigating years of tag-team parenting, of Delaney whose parents miss her laughter as it becomes rarer with age, of Joey living in a group home far from his family, and of Charlie whose parents faced the heartbreaking decision to place him in residential care as a teenager.
These stories were raw and real, and they reminded everyone in the room why this fight cannot wait. Behind every number, and every dollar raised, is a child and a family carrying unimaginable burdens.
Mike’s words left the room quiet, moved, and determined, but there was one story left to tell: Emmy’s. To close out this mission moment, co-chairs Anthony and Chelsey Navarro shared their story around Emmy’s SYNGAP1 diagnosis through a deeply moving video. They spoke of the seizures, the sleepless nights, the unanswered questions. Most importantly, they spoke of their hope for their daughter’s future that they refuse to let her be robbed of.
As emotions were at their peak, so was a collective resolve to make a difference. Tom retook the stage to lead the crowd in a paddle raise for SYNGAP1. Each pricepoint represented something symbolic: $2,500 for the 2,500 words Myla cannot speak to her family, $1,000 for the 1,000+ seizures Carter has weekly without experimental drugs, $500 for the 500 milestones that Emmy will never reach like driving a car or getting married, $250 for the 250 hours of therapies and medical visits that Hadley undergoes instead of parties or afterschool activities, and $100 for the hundreds of stories like that of Jansen, whose parents spent years fighting simply for a diagnosis and who is a representative member of our small, but mighty SYNGAP1 Warrior community.
No one could have imagined what happened next. In just a matter of minutes, over $55,000 was raised for SYNGAP1. In just a matter of minutes, an entire room of people collectively decided that SYNGAP1 kids are worth it. In just a matter of minutes, 170+ people gave voice to the voiceless. Tears were shed, but in their place a Beacon of Hope was born.
As the night ended, and auction winners were announced while friends and families bid each other farewell, the final total was tallied. Over $200,000 was raised for SYNGAP1. That number, combined with the promise of CAMP4 Therapeutics’ upcoming clinical trials (and the fact that most of their team was in the room) made the evening feel like a turning point. Hope wasn’t just something to be talked about but was actually present, visible, and real.
The gala would not have been possible without the volunteers and behind-the-scenes helpers who kept everything running seamlessly. Special recognition should be given to Emily Barnes, our Beacon of Hope Host, who bolstered attendance by soliciting many sponsors and guests, secured our talented photographer who generously donated her time, spearheaded the auction effort, and acted as our designated Boston liaison.
Beacon of Hope also owes an enormous debt of gratitude to Suzanne Jones, whose extraordinary commitment made this event possible. Suzanne poured herself into every aspect of planning and execution, giving countless hours and steady guidance when it was most needed. Quite simply, Beacon of Hope could not have happened without her.
Additional thanks are due to the rest of our SRF Beacon crew including Mike Graglia, Peter Halliburton, Virginie McNamar, Kathryn Helde, Amber Mickler, Lauren Perry, and Jessica Bell. Their collective effort brought the Beacon of Hope Gala to life and ensured it would be a truly memorable evening. We are also grateful to Olivia Spring, whose photography beautifully captured the spirit of the night and preserved the memories we will treasure for years to come.
Finally, we are so deeply grateful to our sponsors who made the evening shine: our Beacon Sponsor, Radiance Sponsors, Glow Sponsors, Spark Sponsors, and Ember Sponsors. We thank the many generous donors who contributed items, experiences, and in-kind gifts to the auction, as well as every ticketed guest and virtual auction winner who joined us in lifting this community higher.
For us, the night was more than a fundraiser, it was a reminder of the power of community. Together, we created not just a spark, not just a glimmer, but a Beacon of Hope.
