Unscrambling the Genetic Mysteries of the Jewish Community
Virtual Program, Sunday, October 17, 2021, 5 p.m.
Did you ever wonder why there are so many Jewish genetic disorders? Do you know why they are mostly found among the Ashkenazi community?
Join us for an inspiring evening as we explore together the mysteries of Jewish genetic disorders and how advances in science have changed what we know about them – from testing and diagnosis to advances in treatment. Guest speakers will include artist, curator and patient advocate Ted Meyer, whose personal experience with Gaucher disease serves as his artistic motivation. Genetic counselor Gary S. Frohlich will offer his wisdom on Jewish genetic diseases, and provide resources on how to get tested.
Gary S. Frohlich, MS, CGC, CareConnectPSS – Patient Education Liaison, Sanofi Genzyme
Gary has been a genetic counselor over 48 years, including over 20 years in Prenatal Genetics where he provided genetic counseling to over 26,000 expectant couples. Today, Gary lectures all over the country on behalf of Sanofi Genzyme and the work they do on rare diseases, including Gaucher. Gary will discuss Our Heritage and our Health – Ashkenazi Jewish Genetics Disease and the Founder Effect.
Ted Meyer – Artist, Curator, and Patient Advocate
Born with Gaucher Disease, Ted’s personal experience with this Jewish disease served as his artistic motivation. Ted helps patients, students and medical professionals see the positive in what life can offer. Ted seeks to improve patient/physician communications and speaks about living as an artist with illness. Ted’s paintings have been shown around the world. Ted was invited to present a TedMed talk in 2016. To learn more about Ted Meyer and view his talk, see A Portrait of the Patient Experience, or go to his website www.tedmeyer.com.
More information on Jewish Genetic Disorders
The American College of Medical Genetics and Genomics Recommends Testing for Jewish Genetic Disorders because:
Individuals of Ashkenazi Jewish descent are at an increased risk for certain autosomal recessive genetic disorders. An estimated one in every four or five individuals of Ashkenazi Jewish descent is a carrier for one of these disorders. The American College of Medical Genetics and Genomics (ACMG) recommends testing individuals of Ashkenazi Jewish descent. This should be done as a routine preconception or prenatal carrier screening.
These disorders include Gaucher disease, Canavan disease, cystic fibrosis, Tay-Sachs, Bloom syndrome, familial dysautonomia, Fanconi anemia group C, mucolipidosis type IV, Niemann-Pick disease, and others. For more information, see here and here.
The Jewish Genetic Disease Consortium (JGDC) increases awareness about Jewish genetic diseases and encourages timely and appropriate carrier screening for all persons who have any Jewish ancestry, as well as couples of mixed heritage. The JGDC is an alliance of non-profit organizations sharing the common goal of combating genetic diseases. While each JGDC member organization has its own individual mission, the JGDC unites these organizations to jointly strengthen public education and awareness about appropriate carrier screening.
JScreen is an example of a not-for-profit at-home education and carrier screening program for Jewish genetic diseases. The goal of the program is to give individuals and families easy access to information and to allow testing to be done conveniently from home. (There is a fee for this testing option.)
Family Support Foundations – Most Jewish genetic disorders have non-profit groups that are there to assist and support families. National Gaucher Foundation (NGF) and the Gaucher Community Alliance (GCA) are examples of these type of organizations. If you learn that you or a family member is a carrier or know someone diagnosed with one of the Jewish genetic disorders, there are groups that can help.
National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
* These resources will get you started on the road to learning more and/or where to turn for more information. Check with your doctor for how to get tested in your area and what is covered by your insurance.