National Experts and Patients Gather at Sept. 8 News Conference to Spotlight Most Prevalent Genetic Disease Facing U.S. Jews.

LOS ANGELES -- The most common genetic disorder facing the American Jewish community will be the focus of a dramatic September 8 news conference, as prominent physicians, geneticists, health advocates, patients and community leaders kick off National Gaucher Disease Awareness Month.

The news conference, sponsored by the National Gaucher Foundation (NGF), will begin at 10 a.m. at the University of Judaism, 15600 Mulholland Drive, Bel-Air. It will introduce an intensive effort throughout the month of September to reach out to major U.S. Jewish population centers to increase recognition of Gaucher disease, a frequently misdiagnosed and readily treatable illness.

According to recent studies, approximately only one out of every 10 Americans with Gaucher disease is currently being properly diagnosed and treated. The high incidence of undiagnosed or misdiagnosed cases results largely from lack of awareness about the condition. Experts report that many who have inherited the disease and were misdiagnosed by their physicians have needlessly undergone splenectomies and other types of unnecessary medical treatments.

Participants in the news conference will include such prominent experts on Gaucher disease as Dr. Barry Rosenbloom, director of the Comprehensive Gaucher Treatment Center at Tower Hematology Oncology; Dr. John Barranger, a pioneering geneticist from the University of Pittsburgh; and NGF Executive Director Rhonda Buyers and Community Relations Director Rosina Cristalli. A number of Gaucher disease patients of all ages also will take part in the program to describe how they have coped with the genetic illness, and will be available for media interviews.

The news conference will lead a series of public presentations in major cities throughout the United States, underscoring the symptoms and treatment of the genetic disorder. Leaders of the Los Angeles-area Jewish community will attend the news conference and will participate immediately afterward in the first Gaucher disease educational program of the month.

As part of the national awareness effort, NGF also will distribute thousands of copies of a recently completed DVD, "A Message to Elijah," narrated by popular actor Elliott Gould. This digital documentary outlines the causes and treatments of Gaucher disease, and introduces viewers to individuals of varying ages who are being treated for the disorder.

According to current medical estimates, the most common form of Gaucher (pronounced Go-shay) disease -- Type 1 -- occurs in one out of every 450 to 600 births of Jews of eastern or central European descent, also known as Ashkenazi Jews. More than 90 percent of all American Jews come from this ancestry.

While less prevalent outside the Ashkenazi Jewish population, the disease can affect anyone, regardless of ethnicity, age or gender.

Gaucher disease is caused by an enzyme deficiency, creating an excessive, frequently painful accumulation of lipids in bone marrow and various body tissues. Today, the disease can be treated and brought under control using an intravenous infusion.

The mission of the National Gaucher Foundation is to find a cure for Gaucher disease by funding vital research, programs to meet the ever-increasing needs of patients and families, as well as promote community/physician awareness and education programs. The NGF offers a variety of services and programs, including regional educational meetings and international conferences. The NGF also provides critical financial assistance to individuals with Gaucher disease through its CARE and CARE+PLUS programs.

For more information about Gaucher disease and National Gaucher Disease Awareness Month, contact the NGF at 1-800-925-8885 or visit the organization's website at http://www.gaucherdisease.org.