New Research Fund at MIND Institute Established Following Donor Gift

The Translational Research Impact Fund seeks to help translate laboratory research into treatments for fragile X

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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A new fund at the University of California, Davis (UC Davis) MIND Institute seeks to speed up turning new research discoveries into therapeutic interventions for people with fragile X syndrome and other developmental conditions.

The Translational Research Impact Fund was established by a posthumous donation from Leon Goldstein, who died earlier this year.

Goldstein’s daughter, Gail Goldstein Heyman, the co-founder and president of the Fragile X Association of Georgia and a member of the MIND Institute’s National Council of Visitors, said no one was aware of the donation until her father’s will was read.

“It just thrilled us,” Heyman said in a press release. “It was amazing that he left us this great resource to help fund things that are important to us as a family.”

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Fragile X syndrome is caused by mutations in the gene FMR1. Almost all cases are caused by a specific type of mutation where three nucleotides (the “letters” of the DNA sequence) are repeated an excessive number of times.

Heyman is a carrier of a fragile X premutation — a genetic change in FMR1 where there are more repeats than normal, but not so many as to cause fragile X to develop.

While many people with a premutation are unaffected, they may pass a fragile X-causing mutation to their children. Premutation carriers also may develop fragile X-associated tremor/ataxia syndrome (FXTAS), a movement disorder discovered at the MIND institute that mainly affects older men. Fragile X-associated primary ovarian insufficiency (FXPOI), a condition marked by infertility and menstrual irregularities, can develop in female carriers.

As a premutation carrier, Heyman has participated in studies at the MIND Institute, which includes about 60 members from more than a dozen departments across UC Davis who are focused on neurodevelopmental conditions.

“MIND Institute research has always been defined by a spirit of collaboration rather than competition and the recognition that the complexities of neurodevelopmental disabilities require building innovative teams of scientists with different approaches to solving those complexities,” Leonard Abbeduto, PhD, director of the institute, said.

The Translational Research Impact Fund seeks to help translate laboratory research into treatments and interventions that can help improve life for people affected by fragile X, as well as conditions such as autism, Down syndrome, and attention-deficit hyperactive disorder (ADHD).

“My biggest hope is to let the researchers know that we’re behind them and that we support them and their work, and I hope we’ll also inspire other families to contribute to the Translational Research Impact Fund, by knowing what important work they are promoting,” Heyman said.

Abbeduto lauded Heyman for her family’s longtime efforts on behalf of people affected by neurodevelopmental disabilities.

“Gail and her family have for many decades given their time and energy to causes that help make life better for families affected by neurodevelopmental disabilities,” Abbeduto said. “Her family exemplifies a wonderful spirit of giving and a commitment to improving people’s lives. We are inspired and humbled by their trust in us.”