FL SCAC Legislative Briefing 2025
Let’s talk about what went down in Tallahassee this week because it was big. The Skeletal Conditions Advocacy Coalition, a group of dedicated advocates working to raise awareness for people living with skeletal dysplasias and other rare bone conditions, hosted a legislative briefing at the Florida State Capitol. Among those in attendance was Kristen DeAndrade, founder of the Little Legs Big Heart Foundation, who represented her organization and the broader skeletal dysplasia community. As well as Palmer, fondly known as Little P, her parents Brad and Julianna and her younger brother Beckham. This wasn’t just another meeting in a marble hallway—it was an opportunity to make some serious noise about what it means to live with a skeletal condition, the challenges people face, the triumphs they celebrate, and the gaps in care that still need to be filled.
Kristen opened the briefing with heartfelt remarks, standing at the front of the room as a woman living with achondroplasia and addressing lawmakers, doctors, and families. She spoke about how the coalition came together because they recognized a shared issue: rare skeletal conditions are often misunderstood, overlooked, and left out of important health policy conversations. Out of more than 10,000 rare diseases and approximately 800 are skeletal.. That’s why this conversation mattered—not to complain or divide, but to shine a light on the real people behind the statistics.
Representative Tiffany Esposito’s aide, Kareli, attended on her behalf, and Kristen later met with the Representative to discuss opportunities for future collaboration and advancing policies that support families affected by skeletal conditions. Dr. Bauer, a pediatrician from Nicklaus Children’s Hospital in Miami, joined virtually to share medical insights about skeletal dysplasias, emphasizing how complex it can be for families to navigate specialists, insurance, and coordinated care.
The most emotional part of the day came from Brad, proud dad to Palmer, his bright and resilient three-year-old daughter who lives with achondroplasia. Brad shared their family’s journey—from the shock of Palmer’s diagnosis and the uncertainty that followed, to the challenges of accessing care and inclusion. He spoke about the pain of having a local Catholic school refuse Palmer admission because she needed help with personal care, despite the school receiving public disability funding. “Schools that receive public funds should be required to make reasonable accommodations for students with disabilities,” Brad said. “Every child deserves access, dignity, and inclusion.”
Following Brad and Juliana, Kristen returned to share her own story—her life with achondroplasia, the limb-lengthening surgeries she underwent, journey with spinal stenosis and the ongoing battles for care that inspired her to create the Little Legs Big Heart Foundation. She reminded the audience that when people with skeletal dysplasias lose access, they don’t just lose coverage; they lose time, independence, and hope. “This isn’t about politics,” she said. “It’s about people.”
While Kristen doesn’t consider herself a political person, she is eager to learn and to work alongside others who understand policy and advocacy. She’s committed to bringing changemakers, experts, and fellow advocates to the table to help drive real change. “I have a lot to learn,” she said, “but I’m willing to put in the work.”
At its core, the event was about more than policy—it was about access, dignity, and quality of life. It was about kids like Palmer, adults like Kristen, and families navigating life with courage and hope. The Skeletal Conditions Advocacy Coalition and the Little Legs Big Heart Foundation continue to fight for those values, ensuring that people with skeletal conditions can thrive, not just survive.
Senator Mack Bernard also attended the briefing, and discussions are already underway to meet again in Palm Beach County to talk about mental health, access to care, and physician education. Progress, after all, happens one conversation at a time.
The day in Tallahassee was more than a meeting; it was a moment. A reminder that even when numbers are small, voices can be powerful. That “rare” doesn’t mean invisible. Every story shared brings the community one step closer to change. The Little Legs Big Heart Foundation showed up, spoke out, and was heard—and this is just the beginning.
