After The Death of a Loved One, This Couple is Determined to Find a Treatment for Fatal Familial Insomnia

According to a story from wired.com, everything changed for Sonia Vallabh and her husband Eric Minikel after Sonia’s mother died from a mysterious illness. Sonia’s mother Kamni was in her early 50s when the first signs of fatal familial insomnia began to appear. It was only after her death, after months of rapid decline and suffering, that the family learned what disease she had actually had. After getting a genetic test, Sonia was found to carry the same genetic alteration that causes the disease. With only a couple of decades left before symptoms begin, Eric and Sonia are now committing their lives to finding a cure for this deadly genetic illness.

About Fatal Familial Insomnia

Fatal familial insomnia is a genetic sleep disorder that prevents a patient from being able to sleep. This results in death in as little as a few months to as long as a few years. It is classified as prion disease and is caused by a mutation affecting the PrPc protein. As a patient’s ability to sleep continues to decrease, the disorder causes symptoms such as paranoia, phobias, panic attacks, sweating, high heart rate and blood pressure, constipation, neck stiffness, hallucinations, dementia, and weight loss. So far, there is no confirmed treatment for fatal familial insomnia. Conventional sleep aids and barbiturates can often make the symptoms of the disease more severe. Only around 40 families are known to carry the mutation and there are only about 100 cases of the disease known to science. To learn more about fatal familial insomnia, click here.

Finding a Cure

Sonia eventually job with a team that is researching Huntington’s disease and Eric started working with a genetics laboratory. Through a nonprofit that they founded in 2012 called the Prion Alliance, the couple has begun raising money to help fund research that could lead to a possible treatment for fatal familial insomnia and other prion diseases. 

To augment their research, Eric and Sonia will soon complete PhDs from Harvard. They will also have to start focusing on more fundraising, as they will need $1 million per year to keep pace. While there are many challenges ahead, they have little else to lose.

Click here to help Eric and Sonia.


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