Post Summit+ Note from our Executive Director

Over the weekend of July 19-20, I attended my first STXBP1 Summit in Colorado, and it was a whirlwind—in the best way. More than 200 STX families, researchers, and industry partners filled the ballroom, sharing both scientific breakthroughs and heartfelt stories. Seeing caregivers and colleagues face-to-face after months of virtual chats reminded me exactly why our work matters and how much hope the community places in us.

The scientific sessions were informative and showed that we’re getting closer to solid results. Between sessions, we managed to fit in a few side meetings. One industry team provided an exciting update on their current STXBP1 programs, highlighting the potential for a broader partnership. And, a representative from another company also emphasized how essential the STARR natural history study is to their work. We also had a productive STARR leadership team meeting with many staff members from CHCO, CHOP, and Texas Children’s.

Saturday night’s banquet was a great way for families to relax and connect. Ben Kahrl gave an inspiring talk about his journey with Lilly, from years of isolated uncertainty to finding purpose and support in the STXBP1 community. We also took the opportunity to recognize the incredible efforts of Matthijs Verhage, Sarah Ruggiero, Paula Rinaudo, and the Baum Family with our 2025 Impact Awards.

Over the next few weeks, I will follow up and reconnect with families, researchers, and biopharma partners to advance all the conversations and ideas discussed during this incredible weekend. I came home fired up—the science is advancing, partners are leaning in, and families left feeling both seen and hopeful. Let’s turn this momentum into real impact!

Mark