Knowledge. Counseling. Screening. Jewish Genetic Diseases

About Us

The Nicklaus Children’s Hospital Victor Center for the Prevention of Jewish Genetic Diseases is a thought leader in the prevention of genetic diseases. Science-based and mission-driven, the Nicklaus Victor Center leverages advances in genetic technology to identify carriers for severe and often fatal childhood diseases more prevalent in the Jewish community.

Mission

The aim of our advocacy and partnerships is to expand access to comprehensive genetic education, screening and counseling services. The goal of our outreach and education is to promote genetic screening and counseling as a standard practice among healthcare providers and the communities we serve, in South Florida and beyond.

History

Nicklaus Children’s Hospital was appointed the National Office for the Victor Center in 2017. The Nicklaus Children’s Hospital Victor Center maintains the nation-wide collaborative work of the center in promoting education related to preconception screening while increasing knowledge, awareness, and access to genetic services.

The Victor Center is under the medical leadership of Dr. Saima Aftab, Director of the Fetal Care Center at Nicklaus Children’s Hospital. Administrative leadership is provided by Dr. Jennifer McCafferty, Director of the Personalized Medicine Initiative and the Nicklaus Children’s Research Institute. Debbie Wasserman is a highly experienced genetic counselor and outreach coordinator and Shari Debowsky is the Senior Outreach Associate for the Victor Center and Fetal Care Center. Both Debbie and Shari serve as community health educators.

Our Founder

The Victor Center was originally founded in 2002 by Lois B. Victor in partnership with Einstein Healthcare Network in Philadelphia. Ms. Victor lost two children to a Jewish genetic disease before a test for the disorder became available. The experience galvanized her commitment to ensuring that no family endures the heartache of a preventable illness by making certain that Jews of childbearing age are screened and get the information they need to have healthy children. Ms. Victor is a native of Boston and a long-time resident of South Florida, and continues to support the national efforts of the Victor Center.

How would you describe the long-term mission of the Victor Center?

That it remain the gold standard for testing of Jewish genetic diseases and continue to educate the community about how important testing is before pregnancy. That we continue to impart the message that these diseases are all preventable and that a simple blood or saliva test can change your life.

Why did you establish the Victor Center?

So that other people would not have to go through what my family went through.

What is your strongest memory or achievement?

Every time we begin a new partnership, we move closer to making it possible for people to have an easier time knowing where and how to get tested. The more partnerships we make, the more information we get out there, the more people can go out and get tested, the better.

Lois B. Victor

Founder and Trustee,
Victor Center

Leadership Team

The Victor Center serves as a national resource to clinical and community organizations around the country. To that end, we:

  • Advocate with professional societies, labs, insurers and healthcare providers to promote coverage of preconception genetic screening and counseling services
  • Develop turnkey resources to enable Jewish community engagement in outreach and education campaigns
  • Cultivate the development of “Model Cities” by assisting local collaborations between healthcare providers and Jewish community groups
SAIMA AFTAB, MD

Medical Director

JENNIFER MCCAFFERTY, PHD

Administrative Director

SHARI DEBOWSKY

Senior Outreach Associate

Community Links

Community Links is comprised of individuals in their 20s and 30s who have a connection to the Victor Center through their personal or professional lives. These young professionals are dedicated to volunteering and networking on behalf of the Victor Center and its mission to educate the Jewish Community about Jewish Genetic Diseases.

Interested in joining our Community Links program?

What Are Jewish Genetic Diseases?

Jewish Genetic Diseases are a group of recessive, inherited disorders that occur with significant frequency in the Ashkenazi Jewish community (those of eastern or central European descent). Individuals of Ashkenazi descent have higher carrier rates for diseases such as Tay-Sachs, Canavan, Familial Dysautonomia, and Gaucher. Many of the diseases are severe, and some are fatal in childhood.

What Is Personalized Medicine?

In the era of personalized medicine, the Victor Center is positioned to make significant contributions to the discovery of important predictors of diseases and important reproductive options. The Victor Center partners with patients, healthcare providers, clergy, community organizations, lay leaders and universities all across the country as well as worldwide. We embrace the change to increase the quality of life through education, clinical innovation and genomics. At the Victor Center we offer personalized care starting with preconception health and screening with the ultimate goal of healthy babies. At Nicklaus Children’s Hospital our moto is For Health, For Life.

Ways To Support

Learn More
We encourage you and your family members to “Get the Inside Story” about your DNA. Discovering your carrier status is the first step in understanding Jewish genetic diseases, preconception screening and reproductive options.

Get Involved
Start a conversation with members of your family, community, professional organizations, religious groups, and social networks to promote the work of the Victor Center. Post on social media and engage your friends and family in the conversation.

Donate 
Thank you for your support! The Victor Center depends on the generosity of our donors to continue our outreach, education, engagement and awareness efforts and to expand access to genetic screening and counseling services.

Contribute online through the Nicklaus Children’s Hospital Foundation, Victor Center.

Community Partners

The Victor Center advances our mission by forming partnerships with local clinical organizations and community-based groups that support Jewish life. Our partners are provided access to Victor Center educational, marketing and communication resources, and technical assistance to support implementation of local education, outreach and engagement efforts.

National Supporters and Local Partners

2016

Program Partners University of California, Irvine

Community Partners

Information Providers

General Genetic Diseases Websites

Genetics Counselors

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