NEW YORK — Two years after Fordham researchers discovered the genetic cause of Familial Dysautonomia (FD), the University celebrated the acquisition of $50,000 in New York City Council funding that will help researchers develop future therapies and search for a cure for the debilitating neurological disease.
The grant will be used to purchase a new sequence-detection machine, which will further enable Fordham researchers to identify natural compounds that will enhance levels of a protein that is deficient in children with FD.
The celebration, held July 24 on Fordham’s Rose Hill campus, was hosted by FD advocates Beverly and Ted Fettman, whose grown daughter Judy suffers from FD, which affects people of Ashkenazi Jewish descent. Judy has been a direct beneficiary of the research efforts led by Fordham Professor Berish Rubin, Ph.D., and Laboratory Director Sylvia Anderson, Ph.D. Judy also has contributed to the research by working in the lab and testing experimental treatments. One such treatment, a form of vitamin E, which was discovered with a similar sequence-detection machine in the Fordham lab, has allowed the Fettmans to forego Judy’s hourly applications of eye drops, a 30-year ritual for the Bronx family. Judy has more energy and is experiencing fewer hypertensive crises, a hallmark of FD.
“It’s obvious that miracles are still happening,” said Beverly Fettman to the crowd of advocates, supporters, legislators and others gathered in Larkin Hall. “I never doubted that they were still happening, I just didn’t know that this [machine]would be part of the grand plan.”
In 2001, the Fordham team discovered that FD is caused by mutations in the IKAP gene, found on chromosome 9. The disorder affects a person’s autonomic nervous system, which controls such involuntary functions as swallowing, digestion, temperature and blood pressure regulation. Individuals suffering from FD, which is as prevalent as the more familiar Tay Sachs disease, also have problems perceiving sensations, such as pain and heat. The life span of FD sufferers is severely compromised and often includes long hospital stays.
New York City Councilman Oliver Koppell, who along with the Fettmans and a Bronx borough delegation was a driving force behind the funding appropriation, was also singled out for his legislative efforts.
“It is obviously a commitment to an important public objective, but it is also a commitment to family,” said Koppell, referring to the Fettmans’ ongoing crusade against FD. “I’ve seen many parents who have given up and these parents have not given up. And not only is Judy the beneficiary of that, but [so are the]many others who are afflicted with this disease.”
During the festivities, a designate from Bronx Borough President Adolfo Carrión’s office presented Rubin and Anderson with certificates of merit in honor of their ongoing FD research.