DECEMBER 2024 NEWSLETTER Dear STAR Supporters, Happy Holidays! 2024 has been an incredible year for our budding foundation, and we are truly beginning to thrive! This year, the Salla Treatment and Research Foundation had the honor of being chosen by the Chan Zuckerberg Initiative (CZI) for a Rare As One Award! For the next 5 years, CZI will help to build the infrastructure of STAR, giving us the tools to hire professionals and internally grow. Perhaps even more exciting, this means that our fundraising going forward will be fully focused on direct science and research! Starting in 2025, STAR Foundation will host a virtual seminar series to help families navigate the array of challenges they might face in raising a child with FSASD; details on our first lectures are on on page 3. Additionally, the CZI Award allows us to dedicate funds to STAR Families, to help them attend our IN-Person meetings. Details will be coming soon about specific dates, and locations. As I look back on our accomplishments since our start in 2018, I am in awe of all that we have achieved together. Winning the Chan Zuckerberg Award is an amazing testimony to our hard work and dedication to finding a treatment for Salla Disease. It's an honor that CZI believes in our work. However, our supporters were the FIRST to believe in our mission that no disease is too rare for viable research and treatment options. For this, I am forever thankful for your contributions and support over the past 6 years. Thank you for being the start, the TRUE foundation, of the STAR Foundation. Warmly, TRANSLATIONAL SCIENCE Jessica Klein-Foglio President and Co-Founder AWARD FUNDRAISER Jessica, Mike, Michael, Ben and The Free Sialic Acid Storage Disorder (FSASD) Consortium Lily advocating for rare diseases has made breakthroughs in understanding the basic science families in Washington DC behind Salla Disease and is now looking to test potential drug therapies in pre-clinical models. If successful, these experiments could lead to clinical trials in Salla patients! To accelerate testing of candidate therapies, STAR is looking IN THIS EDITION to raise a minimum of $100,000 to support a new Translational Award, accepting grant applications in 2025 that will be reviewed by STAR’s Scientific Advisory Board. 1. Welcome & Transitional Award Thanks to a generous initial donation, we are more than 2. Chan Zuckerberg Initiative Award / halfway to our goal! Thank you for being part of this exciting progress! See link and QR code below to donate. Sami’s Smile Update For larger donations, please contact us at info@star- 3. STAR Foundation Family Seminar Series foundation.io for wire transfer information. 4. Resources for our STAR Caregivers 5. FSASD Consortium 2024 News & Progress 6. Research Spotlight 7. RARE-X Patient Registry Update 8. Contact Us Donate now! Page 1 of 8 www.sallaresearch.org