Private New Jersey foundation supports fragile X syndrome research
As much as UC Davis M.I.N.D. Institute researchers Randi and Paul Hagerman have advanced knowledge of fragile X syndrome during the past two decades, few people other than scientists, physicians and parents of affected children are familiar with the disorder. Many parents of children with fragile X syndrome seek help at the M.I.N.D. Institute. One remarkable set of parents, though, concluded that in order for the Hagermans to help them, they needed to help the Hagermans. Despite living nearly 3,000 miles away, Elissa and Eric Boory have generated hundreds of thousands of dollars to support the Hagermans' work.
The Boorys, of the New Jersey community of Cherry Hill, have established a private nonprofit foundation through which they have staged fundraising banquet and auction events in alternating years since 1999. They donate 100 percent of the proceeds to fragile X research.
"Unlike cancer or heart disease research programs, fragile X research attracts little attention or financial support because it's not as widely known," said Elissa Boory. "When we learned that the Hagermans sought funding to advance their studies, Eric and I decided to do something."
Fragile X syndrome is a genetic disorder that is usually identified in early childhood and can result in learning disabilities, delays in speech and language development, severe cognitive impairments and autism. Eric and Elissa Boory had not heard of the disorder until their second child, Seth, was diagnosed with it at 23 months of age. Seth had been pulling his hair out and did not respond appropriately to his parents' voices. The information they obtained from their pediatrician was incomplete and puzzling. Elissa learned about research the Hagermans were conducting in Denver, where they worked at the time, and set up a meeting.
— molecular geneticist Paul Hagerman
"When Eric and I first contacted the Hagerman team, we were frantic because we didn't understand anything about fragile X or its implications, and by then I had another newborn baby. They explained things to us very calmly, and reassured us that we were going to get through all this," said Elissa.
During the visit, developmental-behavioral pediatrician Randi Hagerman performed a clinical evaluation of Seth, and the Boorys talked with molecular geneticist Paul Hagerman about his research.
"Paul shared with us his visions and dreams about the potential treatments that could be achievable through further research," Eric said.
When the Boorys returned to New Jersey armed with the information they needed to proceed with their lives and properly nurture Seth, they established the Cure Fragile X Foundation and began planning their first fundraising event.
"We recognized that additional funding would enable Paul and Randi to hire more researchers and purchase needed equipment, so we decided to rally our community at home in a grassroots effort to raise money," explained Eric, a financial adviser with Morgan Stanley.
Elissa, who had been a Yellow Pages sales representative before raising a family, called upon her marketing talents to solicit donations from businesses. She secured airline tickets, ocean cruises, hotel vouchers, Broadway theater tickets, dinners at elegant restaurants, tickets to sporting events and other enticing auction items.
The Boorys rented a hall, hired an auctioneer and invited 400 friends, neighbors, relatives and members of their synagogue to attend.