CHAN-ZUCKERBERG INITATIVE’S RARE AS ONE AWARD In our June newsletter update, we shared that STAR had applied for the very competitive Rare As One project grant from Chan Zuckerberg Initiative (CZI). We are thrilled to report that STAR was funded! CZI was founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015. CZI’s Rare As One Project supports patient-led organizations across the globe by strengthening communities, building capacity, and promoting collaboration to find treatments and cures for rare diseases. With this grant award, STAR joins Rare As One’s global network of over ninety patient advocacy organizations and will receive funding, support, and mentorship over a five-year period. STAR has jumped right in to the Rare As One community, attending a welcome call with other grantees, their 2024 “Science in Society” meeting in October, and receiving weekly updates on resources available to the Foundation. Rare As One funding will allow us to better support (and grow!) our STAR family network by: Helping to fund TWO in person family/researcher meetings over the next five years, including our first ever convening in Europe (Helsinki, September 2026!) Scholarships to support family travel will be available to each meeting. Funding a family seminar series, with educational speakers sharing information not only about Salla disease, but about how to support families throughout their Salla journey (see page 6 to register!) Funding STAR staffing for better family support and networking, including translation services and help with participation in the RARE-X data registry. Rare As One funding will allow us to better support (& grow) our STAR researcher/clinician network by: Funding a scientific coordinator at STAR, supporting the FSASD Consortium and driving a series of initiatives aimed at accelerating initiation of clinical trials for patients and driving earlier diagnosis of the disease. Funding creation of a ‘standard of care’ document, to guide clinicians who may be unfamiliar with Salla disease. Providing an opportunity for clinician/researchers to meet with families in person; including scholarship support for emerging researchers to attend these meetings. Expanding data collection initiatives such as the patient registry, diagnosis improvement, and a biobank. We are so grateful to CZI for the support and look forward to reporting progress in our next newsletter! The Chan Zuckerberg Initiative was founded in 2015 by Dr Pricilla Chan and Mark Zuckerberg to help solve some of society’s toughest challenges - from eradicating disease and improving education, to addressing the needs of our communities. Through collaboration, providing resources and building technology, our mission is to help build a more inclusive, just and healthy future for everyone. For more information, please visit https://chanzuckerberg.com Sami’s Smile update! In our last newsletter, we shared “Sami’s Smile” a paperback by Oregon author Sarah Anne Swoffer celebrating her friend and neighbor Sami, who is living with Salla disease. We would like to extend a big thank you to Sarah, for sharing profits from the book with STAR! Copies are available from Amazon at https://www.amazon.com/Samis- Smile-Meeting- Friend- Disease/dp/B0D2HWCM7H . Page 2 of 8 www.sallaresearch.org