2025 Progress Report

In this edition of our newsletter, you'll meet our exceptional Salla STAR, Marie, explore our latest translational science awards, and catch up on our recent milestones and activities. Dear STAR Supporters, The STAR Foundation continues to grow and thrive, thanks to you -- our wonderful family, scientific, and donor community. We hope that you enjoy the new online format of our newsletter. The past six months have been busy for STAR. STAR successfully completed our largest fundraiser ever, the Translational Science Award Fundraiser, which allowed us to directly fund TWO research projects aimed at finding therapies for our loved ones. We received more wonderful scientific submissions than we had funds available, so we will be launching a second phase of that campaign later this year. Thank you in advance for your generosity as we continue to support science! With the support of the Chan-Zuckerberg Initiative, we launched a family seminar series in 2025, which is highlighted in this newsletter and available on our website for those who were unable to attend. Again, with CZI's support, we will launch a project later this summer aimed at creating a 'standard of care' or roadmap for families and providers to follow when a new patient is diagnosed. Look for email invitations from our scientific communication lead, Dr. Sarah Goebel, to learn more and participate in this important project later this summer. I look forward to connecting with families in late August to check in and begin planning our next n-person gathering in 2026 (travel scholarships will be available). Finally, I had the privilege of speaking at Children's Hospital of Orange County's Rare Disease Day celebration in late February, and part of that wonderful trip was spending time with the Hanson family, whom you'll learn more about in this newsletter. Marie and her parents inspire me, and I know they'll inspire you too.

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!

Salla Day "Salla Disease" is named for the region of Finland where patients were first identified. Salla, Finland is a remote area with a national park, ski resort, wilderness area -- and its own celebration day, July 19th, which is celebrated in the parish village with local events. Join us to honor and celebrate our Salla STARs, families, and individuals who inspire us every day and raise awareness and funds to fuel hope, research, and support. Donate Now → RARE Raises Over $25,000 The 5th Annual RARE: A Community Event brought together supporters to raise awareness and funds for Salla disease research and family support. Thanks to the generous community, the money raised directly funded one of our latest research grants. Feeling inspired? We can help you host your own event! Reach out to [email protected] to get started! Check out the highlights → Spring Seminar Series Inspires Families We kicked off our family seminar series with two powerful sessions focused on energy management for caregivers and balancing the needs of all your children. Recordings and resources are available if you missed them! Have ideas for future topics? We’d love to hear from you at [email protected]. Stay tuned for more seminars coming soon. Learn More →

Organizational Update: New Name, Same Mission Our organization has officially changed its legal name from A STAR for Ben, Inc. to the Salla Treatment and Research Foundation, Inc. This change ensures our legal name reflects the breadth of our mission and the global reach of our work, strengthens clarity across communications and partnerships, better represents our commitment to the entire Salla Disease community, and aligns our legal identity with how we’ve been operating publicly. Full update available → Resource Roundup: RARE Siblings Rare Revolution magazine featured a series in its recent issue highlighting the impact of rare diseases on the sibling experience. Four adult siblings shared their experience growing up with a sibling with a rare disease, discussing how their lives were shaped, decision-making as a rare disease sibling, and the support for rare siblings and their hopes for the future. Check out the RARE REV-inar Series →

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