Published on: 11/10/2004
MIAMI - The Mathew Forbes Romer Foundation (MFRF) will be conducting its first-ever Miami-Dade Genetic Testing and Education Fair in order to meet the increasing demands for testing in the tri-county area. The inaugural event will take place at Miami Children’s Hospital on Sunday, November 14, 2004.
MFRF, which focuses on education and research for children's genetic diseases of the brain, is leading a team effort to screen potential parents for six fatal genetic diseases: Tay-Sachs, Canavan, Cystic Fibrosis, Gaucher, Familial Dysautonomia and Niemann-Pick.
Appointments for the tests are limited and will only be available to the first 100 potential parents who pre-register and make only a $50 per person pre-payment to the Mathew Forbes Romer Foundation to hold the reservation. The value of the test series is more than $600.
The foundation has scheduled three time preferences for the genetic tests - 9 a.m. to 10:45 a.m., 10:45 a.m. to 12:30 p.m. and 12:30 p.m. to 2 p.m. The tests are a simple blood test conducted by area healthcare professionals and analyzed by Genzyme Genetics' world-renowned test laboratories. All results are confidential to those being tested and their physician.
Support for the South Florida Genetic Testing and Education Fair is made possible by charter sponsors: Genzyme Corporation, Judy Levis Markhoff and MUVICO Theaters with others to be announced shortly.
The American College of Obstetricians and Gynecologists (ACOG) has issued opinions that individuals of Ashkenazi Jewish (Eastern European) descent should be offered carrier screening for Tay-Sachs, Canavan, Cystic Fibrosis and Familial Dysautonomia (added this year). When both parents carry the gene, there is a one-in-four chance with each pregnancy that the child will have the disease. The MFRF encourages testing for potential parents in a high-risk group and those with a family history of any of these diseases.
While increased awareness among the Jewish population has led to a decline in cases of children's genetic diseases, efforts to test and educate must continue, said Romer, adding, "This expanded event will help us continue to spread the word."
Ethnic groups that are also at risk, such as the Hispanic, Haitian, Irish American, French Canadian, Oriental, South African, British and Middle Eastern populations, are not receiving the kind of testing and education that the high-risk groups are getting, said Romer. In fact, of 40 recent cases of Tay-Sachs, Canavan and related diseases in the United States and Canada, 39 were not Jewish, according to a survey conducted by the International Tay-Sachs Disease Screening, Reference Standard and Quality Control Center in California.
"Unfortunately, many do not know the risks involved," said Romer. "Through our efforts, we want to send a strong message to those groups and urge them to consider testing. This will give carriers the information they need to make the right choices for their families, including early intervention with current and future therapies."
Last year, the MFRF's first-ever testing fair in Boca Raton determined that 16 percent carry the genes for the fatal Tay-Sachs, Canavan and Cystic Fibrosis diseases, as well as the serious and sometimes-fatal Gaucher disease. Of the 87 individuals tested, three carry the gene for Tay-Sachs, five for Cystic Fibrosis, three for Canavan and five for Gaucher. One individual carries the genes for both Cystic Fibrosis and Gaucher, and another for Cystic Fibrosis and Tay-Sachs.
"The numbers from last year's testing fair were quite alarming," said Romer. "They were higher than experts expected in a group of this size and with people of such diverse ethnic backgrounds."
As a result of those findings, MFRF strengthened its efforts to reach the southern areas in Dade County as well as Palm Beach and Broward. MFRF recently held its 2nd Annual South Florida Genetic Testing and Education Fair in Palm Beach County at Florida Atlantic University in Boca Raton, testing 79 people and providing multimedia video and counselor education for the community at large.
“In recognizing the need for expanded testing and awareness throughout the tri-county area, we doubled the sites, doubled the number of tests being offered at the greatly reduced cost and added fifty percent more tests,” said Romer. Last year, the tests for Familial Dysautonomia and Niemann-Pick were not included.
MFRF has been working closely with Miami Children’s Hospital and the University of Miami on numerous research and education projects. The foundation recently allocated funds to the hospital for the integration of its Children’s Brain Institute and Genetics Department to establish a world-class Neurogenetics Center, and to the university to provide seed funding for the “Gene Cure” genetics testing program.
The Mathew Forbes Romer Foundation, established in 1998, is a non-profit, tax-exempt organization under section 501(c) (3) of the IRS code that supports education and research of children's genetics diseases of the brain, and is the South Florida affiliate of National Tay-Sachs and Allied Diseases Association, the oldest genetics organization in the country. The foundation, now celebrating its sixth anniversary, is committed to increasing access to quality genetic testing, facilitating research of genetic diseases and bringing diagnostic and treatment options to South Florida.
For more information or to register, call the Mathew Forbes Romer Foundation at (561) 477-0337 or visit www.mfrfoundation.org.
Founded in 1950, Miami Children's Hospital is the only licensed specialty hospital for children in South Florida. Ranked among the country’s best pediatric hospitals by U.S. News & World Report, Miami Children's Hospital offers medical care and services for children from birth to age 21. The 268-bed medical facility treats more than 185,000 patients each year and has expertise in all aspects of pediatric medicine.