Kevin Rohmer and his foundation organize symposium in Florida to honor his son
Kevin Rohmer is on the Board of Directors of the JGDC and his Mathew Forbes Romer Foundation is a member of the JGDC
THE FOLLOWING ARTICLE APPEARED IN THE SOUTH FLORIDA SUN SENTINEL (11/14/10)
BOCA RATON, Fla. – Mathew Romer lived to almost 8 years old, a miracle in the sad world of Tay-Sachs disease.
Most children with Tay-Sachs, a genetic disorder often found among Jews of Eastern European descent, die by 4 or 5. They become listless and unresponsive, lose motor control, cannot feed themselves and ultimately lose their sight and hearing.
His parents, Kevin and Lisajane of Delray Beach, were tested for Tay-Sachs before they had Mathew in 1995. Mistakenly, told they did not carry the gene.
Since then, awareness of genetic diseases and accurate testing has been their mission. Their Mathew Forbes Romer Foundation has raised more than $1.2 million.
A health symposium on Thursday will explore this quickly evolving world of testing for Jewish genetic diseases. Sponsored by the Florida Atlantic Region of Hadassah and the Victor Center for Jewish Genetic Diseases at the University of Miami, the conference will examine genetic counseling, new screening systems, ethical issues and the latest research.
The program will focus specifically on Jewish genetic diseases.
“We wanted to do mass testing as a tribute” [to our son], Kevin Romer said. “Our goal is to test as many couples as possible, and then add the treatments and develop gene therapies.”
The field of genetic testing is developing rapidly: Ten years ago, a blood test could detect six conditions. Now, the test can find 17.
“There have been such huge advances, but there are still no cures,” said Lois Victor of Delray Beach, founder of the Victor Center, which also has programs in Boston and Philadelphia. “All are preventable if people are proactive enough.”
Victor lost two daughters to familial dysautonomia, a Jewish genetic disease with symptoms including blood pressure extremes, frequent lung infections, sweating, vomiting, poor muscle tone and scoliosis. One in 27 Jews of Eastern European descent is a familial dysautonomia carrier.
One in five Jews is a carrier for a genetic disorder, said Dr. Deborah Barbouth, an assistant professor at the University of Miami and director of the Victor Center. When two carriers mate, there is a one in four chance their child will develop one of the disorders.
Amniocentesis, performed at 15-18 weeks, and chorionic villus sampling, done at 10-12 weeks, can determine if a fetus is carrying one of the diseases. But Jewish leaders encourage couples to get their blood tested before they get married so they can figure out a plan if they both are carriers.
“It makes more sense if couples are screened before they get pregnant,” Barbouth said. “We are talking to rabbis in the community to make sure they encourage couples to get screened [during the pre-marriage counseling process].”
Copyright © 2010, South Florida Sun-Sentinel
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