Salla Disease is the most prevalent Free Sialic Acid Storage Disorder (FSASD), a family of genetic diseases caused by the accumulation of the natural sugar, sialic acid. The disease primarily impacts the central nervous system causing serious developmental and cognitive delays. 23,000 patients worldwide are estimated to be affected by the disease but due to poor diagnosis only about 300 cases have been reported.
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.
The FSASD Consortium has made breakthroughs in understanding the basic science behind Salla disease and is now looking to test potential drug therapies in preclinical models. If successful, these experiments could lead to clinical trials in Salla patients.
To accelerate the testing of candidate therapies, STAR is looking to raise a minimum of $100,000 to support a new Translational Award with grant applications reviewed by our Scientific Advisory Board.
For larger donations, please email info@star-foundation.io for wire transfer information.
To accelerate the development of new therapies, the STAR Foundation is helping to enable innovative drug discovery, basic research, clinical studies and improved diagnosis.
Central to these efforts is the FSASD Consortium, a global network of approximately 40 researchers, focused on uncovering the fundamental science behind FSASD and developing potential therapies.
Our story began in 2018 when our son, Ben, was diagnosed with Salla Disease. Established the same year, The Salla Treatment And Research Foundation (STAR) was founded to build a community around making a difference for patients with free sialic acid storage disorders (FSASD). Early in our journey, we were fortunate to be joined by kind and truly engaged doctors, leading researchers and donors.
Together, we have created something incredible with over 40 researchers joining the fight to find a therapy. STAR has become our guiding North Star and our life purpose. We hope you can join us in our bold mission.
In the vast landscape of rare genetic disorders, the Foglio family's journey stands out as an inspirational tale of resilience, determination, and the power of collective effort.
This is a story of rare circumstances, unwavering commitment, and the miraculous collaboration of individuals driven by a shared purpose.
STAR is partnering with RARE-X to build a data collection program for Salla families. When you participate in the Salla data collection program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.
