Our three daughters have Sanfilippo Syndrome Type C. It is an ultra rare lysosomal storage disease. We currently know of 20 Sanflippo type C cases in the US and we estimate that there should be at least another 80 children that are either misdiagnosed or still undiagnosed. The disease is incurable and fatal. No cure or treatment exists. Our government is not doing research for Sanfilippo Type C nor are the pharmaceutical companies. It is up to us to find a cure for this disease. We are trying to raise 1 Million dollars to save our girls lives.
Part of the donations will be used to continue funding research at the Saint-Justine Hospital in Montreal. More of the money will be used to establish a natural history study of patients with Sanfilippo Type C.
- Megan O
- Laura Medeiros
- Marian Levinstein
- The Coppola's
- Debbie Viglirolo
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