The Hide & Seek Foundation

The Hide & Seek Foundation supports research to find treatments for “Niemann Pick Type C (NPC),” a rare genetic disease for which there is currently no cure. Ultimately, NPC ravages the bodies and minds of its victims, who are all likely to experience seizures, psychosis, depression and hallucinations. Their speech becomes slurred, and they have difficulty swallowing, probably requiring a feeding tube.

Death from complications of NPC disease usually occurs in the teenage years or early adulthood; the median lifespan of an NPC patient is 16 years old. Because it is a progressive neurological disorder, one of NPC’s primary symptoms is dementia. NPC also offers a profound opportunity to understand, treat and cure Alzheimer’s.

The Hide & Seek Foundation

The Hide & Seek Foundation supports research to find treatments for “Niemann Pick Type C (NPC),” a rare genetic disease for which there is currently no cure. Ultimately, NPC ravages the bodies and minds of its victims, who are all likely to experience seizures, psychosis, depression and hallucinations. Their speech becomes slurred, and they have difficulty swallowing, probably requiring a feeding tube.

Death from complications of NPC disease usually occurs in the teenage years or early adulthood; the median lifespan of an NPC patient is 16 years old. Because it is a progressive neurological disorder, one of NPC’s primary symptoms is dementia. NPC also offers a profound opportunity to understand, treat and cure Alzheimer’s.

Parents and scientists created SOAR (Support of Accelerated Research for NPC Disease) as a grassroots response to the absence of treatments for NPC. The SOAR collaborative comprises internationally recognized scientists from leading institutions where NPC research is conducted. The researchers function as a tightly integrated unit, allowing for free scientific exchange, and have established an extensive network of scientific collaborators. Click here to learn more about SOAR.

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