Translational Science Awards Announced Congratulations to Dr. Heather Flanagan- Steet (Greenwood Genetic Center) and Drs. Forbes D. Porter and Cristin Davidson (NICHD/NIH), the recipients of the Translational Science Grant, supporting innovative research into therapies for Free Sialic Acid Storage Disorder (FSASD). Read more → Featured: Meet Our Salla STAR Marie! Marie's parents, Diane and Rick, shared her incredible story with us. Marie was born in 1980, the first of our three children. First of all, it must be said that it is not easy to raise a person with special needs, but Marie has brought us much joy over the years. Early on, she was diagnosed with an unusual type of cerebral palsy. Salla Disease was not considered, as it was only first identified a year before her birth. With time, her full needs became clear; she would not be able to walk, and her speech was very limited. Despite this, her spirit always shone brightly. In 2018, after 35 years at home, she moved to a group home, where she continues to thrive. In 2021, when Marie’s sister was pregnant, routine genetic screening revealed she was an asymptomatic carrier of Salla Disease. As we learned more, we realized it matched Marie’s symptoms and our Scandinavian heritage. In 2022, Dr. Raymond Wang confirmed her diagnosis. After 42 years, we finally had an answer. While rare and often progressive, having a definitive diagnosis has brought us peace and clarity. We are so proud of Marie. She is always described as friendly, sweet, and enthusiastic, and her loving, endearing personality (a common characteristic with Salla) is one of her greatest assets. Marie loves being with family, especially her 3-year-old nephew, friends, and close caregivers. She loves music, Disney movies, Scooby Doo, shopping, cheeseburgers, and Diet Coke. Even with limited speech, she makes her opinions known, a clear "yuck" for disliked foods and wheeling out of movies she doesn’t enjoy! We encourage other parents to seek all available support from schools, government programs, and family. Marie’s maternal grandparents provided invaluable help for many years, and her brother, who lives close by, is a consistent source of support. Accepting help when it is available or offered is so important. We remain on a journey with Marie. We try to ensure she has as full and enjoyable a life as possible. The excitement Marie has when she sees us never gets old and brings a special joy to our hearts!