Thank you to all who have contributed to FLOURISH thus far. Your support helped us raise over 1.2 million dollars, and those funds are already making a difference. Combining our efforts with the STXBP1 patient community and the ENDD Center at Penn Medicine and Children’s Hospital of Philadelphia, the STARR study was initiated and funded for its inaugural year. To date, more than 60 patients have participated in the study.

The STARR study is a multi-site natural history study focusing on STXBP1-Related Disorders (STXBP1-RD). Its aim is to comprehend the progression of STXBP1-RD over time and establish a standardized array of clinic assessments and biomarkers for affected patients. This study is a crucial stride toward preparing the community for forthcoming clinical trials of new drugs and therapeutics. It offers an unprecedented chance to amass extensive data on STXBP1, enriching comprehension of its various presentations, symptoms, and outcomes across a wider patient base. Find out more here.