Salla Treatment and Research Foundation NEWSLETTER SUMMER 2024 Dear STAR families, doctors and supporters: Wow, 2024 has been a big year (so far) for our foundation – we hope you enjoy reading about our progress in this summer newsletter. One of the highlights for our family was traveling to Washington DC to support the US Promising Pathways Act to hopefully get promising drug treatments into the hands of families and patients faster. It has been so inspiring to work with other rare disease advocates! Since our last newsletter, STAR has launched a new website and patient registry and has continued to fund scientists working to develop therapies. We also submitted a big (for us!) grant proposal to the Chan Zuckerberg Initiative to take our foundation to the next level. We can all – when we work together – accomplish anything! Enjoy this newsletter and have a great summer. -- Mike and Jessica Foglio, STAR Co-Founders/President STAR FOUNDATION SUBMITS 5-YEAR GRANT PROPOSAL FOR THE CHAN ZUCKERBERG INITIATIVE In this newsletter: In February 2024, STAR submitted a 5-year grant proposal to the Page 1 - Welcome from STAR's Rare As One program within the Chan Zuckerberg Initiative (CZI) to President / CZI Grant Application enable patient-led rare disease advocacy organizations to join the Page 2 - RARE-X Patient CZI Rare As One Network. If funded, the STAR Foundation would Registry Launch receive up to $800,000 over five years and join a group of over 50 Page 3 - RARE Fundraiser / rare disease organizations around the world, each working toward Using Donor Box and Facebook the goals of their own foundation while building a network and to Raise Funds Page 4 - “Sami's Smile: Meeting learning from each other. STAR's Scientific Advisory Board, Board of Our Friend with Salla Disease” Directors, families and stakeholders all provided input on the grant Page 5 - FSASD Consortium proposal, which included requested funding for part-time positions News and Publications at the Foundation, two in-person meetings between scientists and Page 6 - Newly Funded Grant / families, translation services for increased global outreach, and New Researcher in the Spotlight support in building an MRI imaging registry, among other things. Page 7 Summer Travel Tips and Resources We'll find out in August if we're a winner - it's a really competitive Page 8 - Contact / New process, but we think we've put together a great application! More Website Information information: https://chanzuckerberg.com/rfa/rare-as-one/ www.sallaresearch.org Page 1 of 8