Published on: 02/25/2013
Miami-The Miami Children’s Hospital (MCH) Brain Institute has become the new home of the Victor Center for the Prevention of Jewish Genetic Diseases to ensure ongoing access to comprehensive genetic education, counseling services and affordable screenings for all 19 genetic diseases that occur with greater frequency within the Jewish population. Funding support is provided by Miami Children’s Hospital Foundation.
The Victor Center for the Prevention of Jewish Genetic Diseases at MCH provides educational and screening opportunities related to genetic diseases that have a high carrier rate in the Ashkenazi Jewish population, those whose ancestors are from Central Eastern Europe (i.e. Poland, Russia, Germany, Lithuania, etc.). It is estimated that one in four Ashkenazi Jews is a carrier for at least one of 19 genetic diseases.
Thanks to recent advances in the field of genetics, a simple blood test that examines a person’s genes for changes or mutations is all it takes to determine whether the individual is a carrier. Anyone with at least one Jewish grandparent should be screened. The Victor Center provides full service genetic counseling and screening to all interested individuals and couples, through the hospital’s main campus as well as through community screenings.
Students, young adults, newlyweds and young couples considering having children, or those who have had children and need to update their screening panel, can be screened for all 19 diseases for as little as $25, if they have health insurance.
"The MCH Brain Institute has long been a leader in providing care for children with genetic disorders and their families through our Neurogenetic-Metabolic Program. Providing a home for the Victor Center is a natural extension of our role, helping families of Jewish descent better understand their genetic risks through awareness building, genetic testing and counseling," said Dr. Prasanna Jayakar, Director of the MCH Brain Institute.
Dr. Narendra Kini, President and CEO of Miami Children's, said, "The Victor Center for the Prevention of Jewish Genetic Diseases at Miami Children's Hospital represents a golden opportunity for the hospital to make a difference in the lives of children and families of Jewish heritage. Miami Children's looks ahead to using this distinct and invaluable community service as a model for future program development. Individuals of every ethnic group are potential carriers for genetic diseases. Our goal would be to identify genetic disorders common among other key populations -- including our predominately Hispanic population here in South Florida and in Central and South America -- with a goal of helping to forge a brighter future for all."
“Miami Children’s Hospital is continuing the visionary work of Einstein Medical Center in Philadelphia by advancing the need for education, awareness and screening for the 19 Jewish genetic diseases found with greater frequency in the Jewish community. MCH understands the critical role it can play as a national, and international, advocate in the fight against genetic diseases by leveraging the prototype created by the Victor Center with other ethnic communities. We thank MCH and look forward to a successful partnership in our efforts to support a next generation of healthy babies,” said Barry R. Freedman, President and Chief Executive Officer — Einstein Healthcare Network, Philadelphia.
MCH will be hosting screenings for at-risk individuals at its main campus as well as various locations throughout South Florida. The team will also provide individuals who are carriers with education and counseling information about how to prevent these diseases from being passed on to their children and build awareness about the diseases.
The 19 genetic diseases encompassed in the screening include: Bloom syndrome, Canavan disease, cystic fibrosis, dihydrolipoamide dehydrogenase deficiency (DLD), familial dysautonomia, familial hyperinsulinism, Fanconi anemia type C, Gaucher disease type 1, glycogen storage disease type 1a, Joubert syndrome, maple syrup urine disease, mucolipidosis IV, nemaline myopathy, Niemann-Pick disease type A, spinal muscular atrophy, Tay-Sachs disease, Usher syndrome type 1F, Usher syndrome type III, and Walker-Warburg syndrome.
For more information about the Victor Center at Miami Children’s Hospital, please call 786-897-9587.
Funding for the Victor Center for Prevention of Jewish Genetic Diseases at Miami Children’s is supported by the Miami Children’s Hospital Foundation. For information on supporting this initiative, please call 305-666-2889.
About Miami Children’s Hospital
Founded in 1950 by Variety Clubs International, Miami Children’s Hospital® is South Florida’s only licensed specialty hospital exclusively for children, with more than 650 attending physicians and over 130 pediatric sub-specialists. The 289-bed hospital is renowned for excellence in all aspects of pediatric medicine with several specialty programs ranked among the best in the nation in 2008, 2009, 2010, 2011 and 2012 by U.S.News & World Report. The hospital is also home to the largest pediatric teaching program in the southeastern United States and has been designated an American Nurses Credentialing Center (ANCC) Magnet facility, the nursing profession’s most prestigious institutional honor.
About The Victor Center
The Victor Center for the Prevention of Jewish Genetic Diseases offers genetic counseling and screenings for Jewish genetic diseases (JGDs). On a national level, we work in partnership with healthcare professionals, clergy and the community to create awareness about the need to be screened for the 19 preventable genetic diseases with a 1 in 4 carrier rate in Jews. There are currently Victor Centers in Boston, Miami, Pittsburgh and Philadelphia and community partnerships in Atlanta, Birmingham and Dallas. The National Victor Center at Einstein Medical Center in Philadelphia was founded by Lois Victor.