Two children dressed as superheroes running over a field.

Relentlessly pursuing a cure for Salla disease

A group of STAR children sitting side by side on a porch.
Our cause

Salla disease is a devastating neurodegenerative disease in children.

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.

help accelerate research

New Patient Registry

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.

FSASD consortium member Raymond Wang standing in his office.

Driving Salla Research

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.

Selected researchers

The dream team behind our initiative

Making an Impact

Researchers engaged
in FSASD Consortium
in a cure
Raised and
deployed to date
Leading institutions
engaged globally
Families engaged and
supported worldwide
Our story

It started with the Foglio family

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.

The family of STAR child Ben Foglio.
STAR child Sami sitting in a wheelchair smiling and waving.
INSTAGRAM & Facebook

STAR Spotlights