Kathryn Kissam's devotion to finding a cure for Rett Syndrome started off as serendipity.

She was living in St. Louis when her sister, physician and Rett Syndrome researcher Carolyn Schanen, came to town to speak at a family conference about her work with Rett Syndrome.

“I went to meet her for a glass of wine and hear her speak,” Kissam says. “I listened, met a few families and little girls affected and was hooked.”

Rett Syndrome is a neurodevelopmental disorder that primarily affects females. It results in loss of motor skills and speech, as well as seizures.

“From there, my interest and passion grew—especially as I became a mother myself,” she says. “With new babies, I kept thinking, 'If my child had Rett, I sure hope somebody would be getting up and volunteering to help find treatments.' So I did.”

Now based in Baton Rouge, Kissam is chairman of the International Rett Syndrome Foundation (IRSF). From bringing together families who are affected by Rett Syndrome to helping celebrity spokespeople, such as Clint Black, raise awareness for the disorder, Kissam stays busy.

Last month, the seventh World Rett Syndrome Congress took place in New Orleans. This was the first time the Congress has met in the United States, which meant Louisiana residents affected by Rett Syndrome had access to some of the greatest minds and resources in the world.

Kissam won't rest until Rett Syndrome becomes a treatable condition. She might not have to wait long.

So far, IRSF has funded $24 million in peer-reviewed research grants. Three years ago, researchers discovered a molecule that promotes brain development. It reversed the effects of Rett Syndrome in mice. Clinical trials are currently taking place that might result in a cure for Rett Syndrome. rettsyndrome.org

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