Simsbury Resident to Receive Spirit of Hope Award

A Simsbury woman will be recognized for her work to raise awareness and to find a cure for a rare form of epilepsy during the upcoming Dravet Syndrome Foundation gala.

In 2009, new parents who found out their young children were diagnosed with Dravet Syndrome, "a rare and catastrophic form of intractable epilepsy that begins in infancy," came together to form the nonprofit organization The Dravet Syndrome Foundation (DSF).

According to the foundation's website, the goal of the organization is to fast track research to find better treatments and a cure for what one Pleasantville mother calls a "horrible disease."

Kate Hintz's 14-month-old daughter Morgan Jones has been diagnosed with what is also known as Severe Myoclonic Epilepsy of Infancy (SMEI), which continues in the form of frequent seizures as children age.

"Developmental delays appear during the second year of life, although the severity varies among affected children," according to a press release from the Dravet Syndrome Foundation. "Dravet syndrome has no geographic or ethnic boundaries."

This year, DSF is hosting on Saturday, March 31 in Greenwich, CT, to raise money and awareness. The Miami Children's Hospital's Ion Channel Epilepsy Program will be honored at the benefit.

Roberta Berry, a Simsbury, CT, resident will receive the Spirit of Hope Award at the gala. Her 4-year-old granddaughter Talia has Dravet syndrome and Berry "has been dedicated to raising awareness and finding a cure," according to the statement, as well as organizing "numerous events" on her behalf.

Learn more about the Dravet Syndrome Foundation and find out how you can help by visiting its website.