Clinician and Family Meeting October 2023 A huge thank you to Jessica Foglio STAR and Marjan Huizing of NIH for planning an outstanding two day meeting for both STAR families and FSASD Consortium clinicians. Ten onsite clinicians and 26 virtual attendees attended a two day meeting. The meeting ended with a dynamic discussion and question & answer session with STAR families, who attended both in person and online. Eight STAR families attended in person from across the US and Europe. STAR patients in attendance had the opportunity to meet with occupational, vision and physical therapists while parents had time to connect and network. STAR siblings did their own networking (a lot of chasing each other and having fun!), and families and clinicians enjoyed a lively dinner together at a local hibachi restaurant. Thank you to all in person attendees for traveling to New York for this special event! Look for more photos throughout this newsletter and on the STAR website! STAR Scientific Advisory Board names new chairperson In 2023, we welcomed the Montague family (Jonathan, Nathalie and Akina) to the STAR family. Akina is newly diagnosed with Salla. Her father Jonathan has the unique expertise of being both a Salla parent and the CEO of a Biotechnology Company, HotSpot Therapeutics of Boston. Jonathan has agreed serve as the new chairperson for the STAR “We are not alone, and we Foundation Scientific Advisory Board. The board consists of seven can do something.” members, all clinical experts in rare diseases and FSASD. They will review -Jonathan, speaking of the grant submissions and future funding requests received by STAR for STAR family community scientific rigor and will make recommendations to the STAR Board of Directors about funding. Thank you Jonathan and welcome to your family! NOVEMBER 2023 PG 2