There’s a promising gene therapy in development for Sialidosis but funding is critically limited because fewer than 100 people worldwide are known to have it. Every donation, share, and kind word brings us closer to a first-ever clinical trial.
Known cases of Sialidosis worldwide
Ever clinical trial — currently in development
Of donations go directly to research
Year Karima went vegan & started thriving
Years Vegan
A mutation in the NEU1 gene prevents the body from producing sufficient neuraminidase, causing toxic substances to accumulate in cells and progressively damage the nervous system.
Type 1 (like Karima's) typically appears in adolescence with milder symptoms including tremors and vision issues. Type 2 is more severe and appears earlier in life. Both are devastating without treatment.
With fewer than 100 known cases worldwide, Sialidosis is classified as an "ultra-rare" disease. The tiny patient population makes it difficult to attract pharmaceutical investment for research and clinical trials.
CureSialidosis is funding pioneering gene therapy research that could restore NEU1 function. The first clinical trial is in development — and your support makes it possible.
I was diagnosed with Sialidosis Type 1 as a teenager. By 15, I was using a wheelchair. The diagnosis was overwhelming — not just for me, but for my entire family. The hardest part wasn’t the physical symptoms; it was the loneliness of having a condition so rare that most doctors had never heard of it.
Meeting Dan and Faith from Switzerland — two siblings who also have Sialidosis and live full, active lives — changed everything. They showed me what was possible. Their plant-based lifestyle inspired my own transition to veganism in 2019, and the improvement in my wellbeing has been real and significant.
Now I’m channelling that energy into advocacy. I raise money through CureSialidosis and my personal GoFundMe (Cure4Karima) to help fund gene therapy research that could change — or save — lives. I believe in a future where Sialidosis has a treatment. And I believe we can get there together. 💚
