The Finn Beaubien Family
Florence was born on July 11, 2020, during the height of the COVID-19 pandemic, a time marked by both anxiety and profound love. Amidst the uncertainty and challenges, our perfect baby Florence arrived, healthy and full of life, bringing immense joy into our lives.
Flo’s first year was a time of wonder and bonding, filled with reading books, swimming, singing, and dancing together as a family. However, during her nine-month check-up, her pediatrician noticed that she wasn’t yet sitting independently and recommended physical therapy. At ten months, Flo began her journey with physical therapy and made swift progress, soon sitting up with assistance. We pursued further testing to ensure her well-being, which led to a life-changing revelation.
On November 15, 2021, we received the news that Florence had been diagnosed with STXBP1 Disorders, a rare and serious neurodevelopmental condition caused by a spontaneous genetic mutation. The diagnosis was a shock; I vividly remember receiving the call alone, in my car, during a visit to an artist’s studio in Detroit. The genetic counselor explained that this disorder, which neither her father nor I had passed on, would significantly impact Florence’s life. The reality was difficult to comprehend; she would never live independently, and there was uncertainty about if she would walk, speak, or one day develop severe epilepsy. This devastating news fueled our resolve to do everything possible for Flo and support ongoing scientific efforts to find a treatment.
STXBP1 Disorders, first identified in 2008, affect approximately 1 in 30,000 births and are among the most common causes of genetic epilepsies. The condition presents a wide range of challenges, including severe intellectual disabilities, motor deficits, epilepsy, and developmental delays. Currently, there is no treatment or cure, and the oldest known person with the disorder is in their early 40s.
Since the diagnosis, our lives have been an emotional whirlwind, filled with moments of hope and tears. Florence faces her challenges with extraordinary determination, at times attending up to seven therapy appointments weekly, along with numerous doctor’s visits. Her spirit is bright and resilient, bringing joy to everyone around her. While it is painful to be unable to protect her from this reality, we remain hopeful for a disease-modifying treatment. We are grateful for our incredible support system, including the STXBP1 Foundation, other parents and caregivers, doctors, researchers, and hospitals, all working tirelessly towards finding a cure.
In September 2023, we moved to New York City, where Florence now attends Manhattan Star Academy (MSA). MSA, located on the Upper West Side, is dedicated to helping children with global developmental delays, autism spectrum disorder, speech and language delays, and other neurodevelopmental disabilities. This supportive environment provides Florence with the specialized care she needs.
Florence’s interests are as vibrant as she is, including saying hello, water play, dancing, trampolines, bubbles, dining, watching Moana, reading books, and swinging. Despite the challenges, she has achieved big goals: she started walking at three and a half years old and began dancing just before turning four. Each achievement, reached in her own time, brings her and us tremendous pride and joy.
A significant part of our journey has been our commitment to fundraising and raising awareness about STXBP1 Disorders. On September 29th, 2022, we hosted “Art for the Future — A Charity Auction Supporting a Cure for STXBP1 Disorders” at Christie’s, New York. This event brought together a remarkable group of artists and friends who generously donated their works to support the cause. The auction was a resounding success, raising an incredible $1,135,500, with all proceeds directly funding the STXBP1 Foundation. We are deeply grateful to the contributing artists, including Jules de Balincourt, Gina Beavers, Sarah Braman, LaKela Brown, Nick Doyle, Keltie Ferris, Derek Fordjour, Sayre Gomez, Rashid Johnson, KAWS, Robert Longo, Eddie Martinez, Sam Moyer, Laura Owens, Dana Schutz, Nolan Simon, Mika Tajima, Brent Wadden, and Jonas Wood, for their generosity and support.
Additionally, FLOURISH Cash Fund has raised over $153,000.00 alongside the auction. These fundraising efforts have been pivotal in supporting the STARR study, a comprehensive natural history study for STXBP1-related disorders. This study aims to understand disease progression and prepare for clinical trials. Over 100 children have now been seen across four hospitals/research facilities with new clinical sites recently added at Cincinnati Children’s Hospital and Stanford Children’s Health. This expansion helps alleviate the travel burden for families with medically fragile children.
We are endlessly proud of Florence and deeply grateful to be part of the broader STXBP1 community. We remain committed to advocating for her and others with the disorder, working towards a future where Florence and others can live fulfilling, joyful lives.
About Florence’s Parents
Sam Beaubien is Florence Beaubien’s biggest motivator. He is also a composer, musician, producer, audio engineer & educator. He received a BFA in Music Education and an MFA in Jazz Composition from Wayne State. Sam is founder and bandleader of Will Sessions, he is also Creative Producer at WDET, Detroit’s NPR Station.
Bridget Finn is currently serving as the director of Art Basel Miami Beach, and she previously held the position of partner at Reyes | Finn, a contemporary art gallery located in Detroit, MI. Additionally, she co-founded Art Mile | Detroit, a citywide digital art exhibition celebrating Detroit’s rich and diverse arts scene. Bridget earned her BFA from The College for Creative Studies in Detroit and has been involved with esteemed organizations such as The Board of Trustees of Independent Curators International (ICI) and New Art Dealers Alliance (NADA). Above all, her most cherished role and accomplishment is being Florence’s Mom.
FLOURISH 