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Maya continues to inspire the fight against Tay-Sachs and related diseases. Every 30 minutes a child is born with Tay-Sachs or a related disease. There is no cure or treatment. Tay-Sachs and nearly all the related diseases are fatal in early childhood.
What is Tay-Sachs?
It is caused by a missing enzyme (Hex-A) that leads to the build-up of a fatty substance (GM2 ganglioside). This accumulation causes progressive damage to the nerve cells in the brain. It is an inherited disease – both parents
must carry the gene in order to have a child with this disease (1 in 4 chance with every pregnancy). Tay-Sachs has three forms: Classic Infantile, Juvenile and Late Onset.
Children with the infantile form appear healthy at birth and progressively lose the ability to crawl, swallow and eventually suffer from breathing difficulties. Many do not live past their fifth birthday. Kids with juvenile onset develop similar symptoms but at different ages which ultimately dictates the severity and the course the diseases takes. Adults with late onset suffer from motor difficulty, slurred speech and sometimes mental illness.
Is there a cure?
Not yet, however, there is very promising research being funded by NTSAD that could provide HOPE to many families.
How you can help NTSAD and our families who struggle with diseases like Tay-Sachs
By participating in this event, you are showing your support. The proceeds will ensure families receive the emotional and informational support to help them get through the difficult days. Funds will bolster research in this field and provide families with Hope – the most precious of commodity of all.