Concert to Benefit Research Into a Rare Genetic Disease

‘On the Wings of Song,’ a concert to benefit the Cure FD Foundation, which is helping hundreds of children who are suffering from FD (Familial Dysautonomia), will be held on Sunday, April 25 from 3 to 6 p.m. at Leo Baeck Temple, 1300 Sepulveda, directly across from the entrance to the Getty Center. A silent auction will precede the family concert showcasing the musical talents of Los Angeles rabbis and cantors from five different congregations, emceed by television host Mark Wahlberg, in a program of jazz, Broadway, Israeli and folk songs. The stars of the show will include Rabbi Steven Carr Reuben of Kehillat Israel; Rabbis Morley T. Feinstein and Zach Shapiro and Cantor Jay Frailich of University Synagogue; Rabbi Ken Chasen and Cantor Wally Schachet-Briskin of Leo Baeck Temple. Last spring, 38-year Palisades residents Mavis and Al Feinberg, whose 6-year-old grandson has FD, started the Cure FD Foundation, to help children suffering from this neurological, degenerative genetic disease which affect Ashkenazic Jews. The organization has several Palisadian board members, including Irwin Feinberg (one of the Feinbergs’ four children, all of whom are PaliHi graduates), Judy Silk, Stephanie Blackman and Amy Madnick. The disease is currently fatal, and is as common as Tay Sachs disease once was. It can appear from out of nowhere after generations that were untouched by FD. One in 27 people of Eastern or Central European Jewish descent carries the recessive gene that causes the disorder. A newborn baby with FD must live daily with life-threatening conditions affecting the heart, lungs, autonomic and sensory nervous systems, ability to swallow, suck, eat and speak, but not intelligence. However, research now being pursued at the Lab for Familial Dysautonomia Research at Fordham University, under the direction of Dr. Berish Rubin, has already achieved two breakthroughs, so that the children with FD are now improved in their stamina and heart function, and have fewer crises. Rubin believes that, with adequate funding, in five years these children will no longer die of FD and will lead nearly normal lives. Last summer, Rubin discovered two natural compounds, tocotrienols and green tea, which, when ingested together by the children with FD, cause an increase in the amount of the IKAP protein that is lacking in these children and is critical for normal functioning of the neurological system. Rubin noted in a recent interview, ‘The positive effect that the tocotrienols and the green tea are having on children with FD has been incredible. Children who were confined to wheelchairs are now walking. Children who never had tears are now capable of crying. Children who were in crisis for week-long periods are now crisis-free. ‘We are expecting that the taking of these supplements will result in an increased life-span for the children,’ Rubin continued. ‘Our hope is that as we continue to gain new information about how to control IKAP levels we will be able to continue to positively impact the lives of those with FD.’ Blood tests are now available for parents to see if they are carriers. Both parents must be carriers for a child to get the illness. This is the founation’s third fundraiser on behalf of Dr. Rubin’s research. The silent auction preceding the concert will features items such as Correia art glass and studio tour, hotel and cruise vacations, a cooking class with a professional chef, and special sports memorabilia. Tickets are $54 per adult and $18 per child or full-time student (under 3 years, free). Contact: Cure FD Foundation office at 459-1056 or info@curefd.org