Letter from STAR President Jessica Klein Foglio On behalf of the entire Board of Directors of the Salla Treatment and Research (“STAR”) Foundation, I am delighted to present our 2018-2019 report. This document has been carefully prepared by the Board to inform our researchers, friends, and families of the remarkable progress and status of our fledgling organization, and what remains for us to accomplish. We want to share with you our mission, our goals, and the Hundreds of hours of time and effort have been donated significant impact that all of our stakeholders have had on to this organization and cause, many by families with no our organization - every dollar has resulted in direct direct ties to the disease. We personally thank you all for impacts to our progress in establishing more baseline your generosity and empathy to those of us who face this research regarding Salla. Our foundation is the direct disease daily. "STAR families" - those represented on our result of passion - the passion of mothers and fathers who Board and all who have dealt with Salla - have felt the chose not to accept a diagnosis of an orphan disease for hopelessness and loneliness of this diagnosis; we have which there is minimal research, little outlook, and no cried tears from frustration over the seeming unfairness of treatment or cure. We are families that have pooled our our circumstances and have also wept in joy in seeing our resources and our talents to start something from nothing; children progress, meet, and exceed seemingly impossible we endeavor to sponsor the research and effort that yields milestones. It is from these moments and memories that Letter from STAR President treatments and cures for any person in the world that is drive us - to make the change we want that no one should affected by Salla. Despite the challenges and tribulations have to experience those moments again. We hope you many of our families have faced, we remain optimistic and share in our optimism that the journey to a world without humbled - this foundation has been supported by an Salla has begun and we thank you for every person’s part outpouring of moral and financial support by families and in beginning - and completing - this journey. friends. 4