Genetic disease charity tries to rebuild after fire
New Jersey Jewish News - New Jersey News Story
Genetic disease charity tries to rebuild after fire
by Robert Wiener NJJN Staff Writer
The CARES Foundation, a worldwide clearing house for help and information involving a disease disproportionately affecting Ashkenazi Jews, is seeking to rebuild itself after its Millburn headquarters was devastated by an early-morning fire on Feb. 17.
The foundation — which aids people with Congenital Adrenal Hyperplasia — lost most of its equipment and computer records when flames rose from the first-floor party room of Casa Colombo, a social club on the ground floor of the two-story wooden building to the CARES offices one floor above. No one was injured in the blaze, which Millburn fire investigators said was “not suspicious in origin.”
“It’s a huge setback,” said Meryl Stone of Short Hills, the CARES Foundation’s associate director. “We lost all the contact information with our membership. Our members aren’t just around here; they are from all over the place. The only way we keep in touch with people is through e-mail and phone numbers. Those are lost. We’ll have to piece things back together like a jigsaw puzzle.”
“This was our lifeblood,” said Kelly Leight, the foundation’s founder and executive director. “This was the way we reached our 2,000 families and 500 physicians.”
Lost to the flames were data bases of donors, medical specialists, and 35 domestic and 10 foreign support groups; grant proposals; and information about the group’s annual conferences, where families in need of help are connected with physicians who specialize in CAH research and treatment.
The condition, resulting from a hormone deficiency, can trigger the early onset of puberty. Although most of its forms are not life-threatening, the young people afflicted suffer growth problems, hirsutism, acne, baldness, migraines, infertility, and depression.
“It is not curable,” said Leight. “It has to be treated for life with steroids to suppress excess androgens,” a course of treatment similar to a diabetic’s need for daily insulin.
For Ashkenazi Jews, those whose ancestors came from Eastern Europe, the most common form of CAH occurs in one of every 27 people. For Latinos, the rate of CAH is one in 40 people. In the Italian population, the frequency is one in 300.
“We had notes on families so that we knew what conversations we’ve had with them,” said Stone. “We knew what their child’s needs were. All of that is lost. You can’t put a price tag on it. It is years of information.”
In addition, all of the group’s financial records are gone. “We have to start with a brand-new chart of accounts and piece together what we need for the IRS,” she said.
As they sat around their temporary office at Leight’s kitchen table in Short Hills, a cell phone rang. Stone left the room to speak with the caller from a computer data recovery service. She returned to bring Leight the bad news: Their hard drive data is “unrecoverable, warped from the heat.”
So, too, were records and information translated into Spanish to aid Latino families in need and the grant applications that had been prepared but not yet submitted.
“We had a data base that listed all the articles we had on the Web site, indexed by topics and by authors. This was years and years and years of work,” said Leight.
“We need financial support, affordable office space in the Maplewood, Millburn, Short Hills area, telephones, computers, and office supplies,” said Leight. “We don’t even have a stapler.”
Within 48 hours of the fire, her rabbi, Daniel Cohen of Temple Sharey Tefilo-Israel in South Orange, backed his station wagon into her driveway and unloaded two brand-new computers, complete with monitors and printers.
“He’s such a mensch,” Leight said. “This is the kind of stuff that makes you cry.”
But the foundation still needs laptops, furniture, a fax machine, telephones, and a copier, and, said Leight, “we are dreadfully under-insured. I’m estimating we are $100,000 in the hole.
“We are a small foundation. We don’t charge for our services or membership. Our conferences are free. If somebody needs to go to a medical specialist, we get them there. Everything we do has been for free. We survive on small checks our families send us. We need financial angels,” Leight pleaded.
“But this isn’t going to stop us,” said Stone. “We’ve got a server that’s being built. We’ve got software that’s coming. We just have to start from today to figure out how we notify everybody, how we get people’s records back in. Then we will need volunteers to do data entry.
“We want to let all of our members and the physicians in this area know to go on our Web site so we can keep in touch and not lose contact with them,” said Stone. “Or, they should call us at 973-912-3895.”
“If there is a silver lining here, it is the community becomes more aware of this disease — the diagnostic symptoms and where to go for help,” Leight added.
Reprinted with permission New Jersey Jewish News
Genetic disease charity tries to rebuild after fire
by Robert Wiener NJJN Staff Writer
The CARES Foundation, a worldwide clearing house for help and information involving a disease disproportionately affecting Ashkenazi Jews, is seeking to rebuild itself after its Millburn headquarters was devastated by an early-morning fire on Feb. 17.The foundation — which aids people with Congenital Adrenal Hyperplasia — lost most of its equipment and computer records when flames rose from the first-floor party room of Casa Colombo, a social club on the ground floor of the two-story wooden building to the CARES offices one floor above. No one was injured in the blaze, which Millburn fire investigators said was “not suspicious in origin.”
“It’s a huge setback,” said Meryl Stone of Short Hills, the CARES Foundation’s associate director. “We lost all the contact information with our membership. Our members aren’t just around here; they are from all over the place. The only way we keep in touch with people is through e-mail and phone numbers. Those are lost. We’ll have to piece things back together like a jigsaw puzzle.”
“This was our lifeblood,” said Kelly Leight, the foundation’s founder and executive director. “This was the way we reached our 2,000 families and 500 physicians.”
Lost to the flames were data bases of donors, medical specialists, and 35 domestic and 10 foreign support groups; grant proposals; and information about the group’s annual conferences, where families in need of help are connected with physicians who specialize in CAH research and treatment.
The condition, resulting from a hormone deficiency, can trigger the early onset of puberty. Although most of its forms are not life-threatening, the young people afflicted suffer growth problems, hirsutism, acne, baldness, migraines, infertility, and depression.
“It is not curable,” said Leight. “It has to be treated for life with steroids to suppress excess androgens,” a course of treatment similar to a diabetic’s need for daily insulin.
For Ashkenazi Jews, those whose ancestors came from Eastern Europe, the most common form of CAH occurs in one of every 27 people. For Latinos, the rate of CAH is one in 40 people. In the Italian population, the frequency is one in 300.
“We had notes on families so that we knew what conversations we’ve had with them,” said Stone. “We knew what their child’s needs were. All of that is lost. You can’t put a price tag on it. It is years of information.”
In addition, all of the group’s financial records are gone. “We have to start with a brand-new chart of accounts and piece together what we need for the IRS,” she said.
As they sat around their temporary office at Leight’s kitchen table in Short Hills, a cell phone rang. Stone left the room to speak with the caller from a computer data recovery service. She returned to bring Leight the bad news: Their hard drive data is “unrecoverable, warped from the heat.”
So, too, were records and information translated into Spanish to aid Latino families in need and the grant applications that had been prepared but not yet submitted.
“We had a data base that listed all the articles we had on the Web site, indexed by topics and by authors. This was years and years and years of work,” said Leight.
“We need financial support, affordable office space in the Maplewood, Millburn, Short Hills area, telephones, computers, and office supplies,” said Leight. “We don’t even have a stapler.”
Within 48 hours of the fire, her rabbi, Daniel Cohen of Temple Sharey Tefilo-Israel in South Orange, backed his station wagon into her driveway and unloaded two brand-new computers, complete with monitors and printers.
“He’s such a mensch,” Leight said. “This is the kind of stuff that makes you cry.”
But the foundation still needs laptops, furniture, a fax machine, telephones, and a copier, and, said Leight, “we are dreadfully under-insured. I’m estimating we are $100,000 in the hole.
“We are a small foundation. We don’t charge for our services or membership. Our conferences are free. If somebody needs to go to a medical specialist, we get them there. Everything we do has been for free. We survive on small checks our families send us. We need financial angels,” Leight pleaded.
“But this isn’t going to stop us,” said Stone. “We’ve got a server that’s being built. We’ve got software that’s coming. We just have to start from today to figure out how we notify everybody, how we get people’s records back in. Then we will need volunteers to do data entry.
“We want to let all of our members and the physicians in this area know to go on our Web site so we can keep in touch and not lose contact with them,” said Stone. “Or, they should call us at 973-912-3895.”
“If there is a silver lining here, it is the community becomes more aware of this disease — the diagnostic symptoms and where to go for help,” Leight added.
Reprinted with permission New Jersey Jewish News
0 Comments:
Post a Comment
<< Home