FEATURE | Posted Oct. 13, 2014

Heyman family: Our gift

Family's gift toward fragile X syndrome research

Heyman family
Gail Goldstein Heyman and her husband, Lyons, first met Randi Hagerman at a meeting of the National Fragile X Foundation in the early 1990s. The mother of a son with fragile X syndrome who then was 9 years old, Heyman found Hagerman’s understanding of fragile X stunning.

“After hearing Hagerman’s talk, I remember putting Scott to bed at night saying to myself ‘Now I know who you are!’” Heyman recalled. “Prior to that, I didn’t understand any of my son’s anxieties or his social and cognitive behaviors. I didn’t understand what made him tick. I didn’t understand what his needs were or how to calm him.”

“Randi Hagerman works closely with families in all of these areas, and her advancements on the clinical side are something that we want to support.”
— Gail Heyman

Fragile X would leave a lasting impression on the Heyman family, beyond their son’s diagnosis. Other family members also have been diagnosed with fragile X-related disorders: Heyman’s daughter Carly Heyman Godzanker was diagnosed with fragile X-primary ovarian insufficiency (FXPOI). Other family members have been diagnosed with fragile X-tremorataxia syndrome (FXTAS), a condition first identified by Randi and Paul Hagerman in 2003.

The child whose behavior first was illuminated by Randi Hagerman’s insights now is 33 years old. He lives independently with support with two of his best friends, has a job at Publix market and has won numerous medals in the Special Olympics, including medals in golf, tennis and power lifting. He inspired his little sister Carly to write a book: “My Extra Special Brother: How to Love, Understand and Celebrate Your Sibling with Special Needs.”

Randi Hagerman © iStockphoto
Randi Hagerman

Finally, Carly’s diagnosis with FXPOI would inspire another sibling, Jared, to found CrowdMed, a San Francisco-based and venture-backed Silicon Valley startup which today harnesses the “wisdom of crowds” to help solve the world’s most difficult medical cases.

Gail Heyman is the co-founder of the Fragile X Association of Georgia, of which she is the president. Last year, she joined the UC Davis MIND Institute’s National Council of Visitors, to support the MIND Institute’s mission of advancing research into the causes of and treatments for neurodevelopmental disabilities.

“Randi Hagerman works closely with families in all of these areas, and her advancements on the clinical side are something that we want to support,” Heyman said.

“There’s nothing like Randi Hagerman,” she said.

“She has a way of connecting to exactly what your greatest needs and concerns are. She offers solutions and suggestions, and you’re always left better and stronger for having talked with her. She has fortified our family. She’s better than vitamin D!”

 

Pictured above from left to right: Scott Heyman, Roy Godzdanker, Gail Heyman, Lyons Heyman, Carly Godzdanker and Jared Heyman.