FROHLICH

 

Jewish genetic diseases topic of free talk April 19

By JEWISH REVIEW

article created on: 2009-04-01T00:00:00

Facts about Jewish genetic disorders will be the topic at noon, April 19, at a free program at Congregation Neveh Shalom.

Program organizer Bonnie Davis, whose first son Adam died of Tay-Sachs in 2001 at age 2½, wants to be sure families have information about genetic diseases more common among Ashkenazi Jews so others don’t have to face what she and her family suffered. She said she also is motivated to share her story as a way to honor Adam’s memory.

No treatment or cure exists for Tay-Sachs disease, a genetic disorder more common among Ashkenazi Jews than in the general population. The disease is a progressive neurological disorder that is usually fatal by age 5. Numerous other diseases also are more common in Ashkenazic populations.

One in five Ashkenazi Jewish individuals is a carrier for one of the following 11 diseases: Bloom’s Syndrome, Canavan disease, Cystic Fibrosis, Familial Dysautonomia, Fanconi Anemia Type C, Gaucher Disease Type 1, Glycogen Storage Disorder Type 1a, Maple Syrup Urine Disease, Mucolipidosis IV, Neimann-Pick Disease Type A and Tay-Sachs disease.

Many of these diseases are severe and can lead to the early death of a child. One simple blood test (and newly emerging saliva test) can screen for all 11 diseases.

“Join us for an afternoon of information that could shape your family’s future,” said Davis.

The program will address founder effect, or how the genes for these diseases got into the Ashkenazi population, as well as some basic genetics, a description of the diseases and how to go about getting screened.

The program will feature genetics counselor Gary S. Frohlich and OHSU professor Dr. Robert Steiner.

Frohlich, of CGCGenzyme Therapeutics, is a certified genetics counselor with more than 35 years experience. He began his career in a neonatal intensive care unit, transitioned to prenatal genetics and now works with patients with treatable lysosomal storage diseases, particularly Gaucher disease, the most common Ashkenazi Jewish genetic disorder.

Steiner is professor of pediatrics and molecular and medical genetics and vice chair for pediatric research at Oregon Health and Science University. With more than 15 years experience in lysosomal storage diseases, Steiner is a frequent lecturer, nationally and internationally, on these and other metabolic diseases.

Held at Neveh Shalom, 2900 SW Peaceful Lane, the program is co-sponsored by Jewish Family and Child Service and Neveh Shalom with support from the Mittleman Jewish Community Center.

Free admission includes brunch and complimentary childcare. RSVP is required. Contact Rebecca at rmoeri@nevehshalom.org or 503-246-8831 ext. 100.