FROM JESSICA FOGLIO CO-FOUNDER AND PRESIDENT, STAR As STAR was being represented in the Dominican Republic and Sweden, my husband Michael and I were sharing our experiences with a new group of families at the Albert Einstein College of Medicine. Much like our initial “Think Tank” in September 2018, families from around the world met to discuss a path forward for a rare disease afflicting their children called KDM5C. STAR has far surpassed the expectations of the new initiative launched by Montefiore Children’s Hospital and the Einstein College of Medicine, called “Operation IDD Gene Team.” This program allows for families and doctors to connect in an easier way with hopes to promote science and awareness into the rare disease that plagues their children. We had the honor of mentoring the families with KDM5C in starting their own foundation, building relationships with doctors, fundraising ideas, and the needed government paperwork to become a foundation, among other issues. Knowing that our success in STAR is what budding foundations strive for is so inspiring! We are impacting other rare disease families in a significant way and this is truly because of the strong relationships all of the Salla families and supporters have built together. To our Salla families, friends, and supporters, please read this newsletter with a renewed sense of hope. Rest assured that we will remain steadfast amidst the chaos and uncertainty of COVID-19. We are truly pioneering the outcome and science of this disease. With warmest regards and deepest thanks, “It’s quite a scary path to walk on, when you have no one’s past Jessica experience to lean on, or learn from. It’s all new and uncharted... but nothing is finished unless it is started.” 10