FROM OUR NEW BOARD MEMBER, KATHRINE ROA STAR NORWAY I'm Kathrine. I am married to Stian and we have two wonderful children, Jonas at 10 years and Anea at 6 years. We live right outside Hønefoss, Norway. Anea has Salla disease, diagnosed when she was 2.5 years old, but we started our journey when she was 4 months old. We are committed to spreading knowledge so that families will not need to experience the same feeling that we did when receiving this diagnosis, with so little information and hope. We want to do something about this! At the end of January 2020, a 4-day family course was held for all families in Norway with Salla at FRAMBU, which is a competence center for rare diseases here in Norway. Prior to this course we received a request to provide a lecture to discuss our journey with Salla, both good and bad. Two doctors from Finland also conducted a lecture, Dr. Liisa Paavola, Ph.D, a specialist in neuropsychology, and Tarja Varho, MD, a specialist in pediatric neurology. It was very exciting and educational to have a meeting with them and to create more useful and stronger contacts for the future. Stian and I have now started a separate organization in Norway, STAR Norway (Salla Treatment And Research Foundation). This is exciting! One separate chapter in Norway with the support of STAR and Jessica. The road continues to grow as we move forward and we learn something new each day. We seek to build a network for families around the world, advancing awareness and knowledge about the disease. With the huge support we are already receiving, I am confident that together, we can do this! Kathrine 7