Gaucher Community News - National Gaucher Foundation

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September is National Gaucher Awareness Month Please Join Us! “KNOW YOUR HERITAGE” SEPTEMBER SUMMIT The National Gaucher Foundation will be convening a “Know Your Heritage” summit for Jewish community leaders and health care providers. This is in response to alarming new data that only 6% of American Jewry is aware of Gaucher disease ( Pronounced “Go-shay”) the most common genetic disease affecting the Jewish community. More common than Tay-Sachs disease, 1 in 15 Ashkenazi Jews are carriers of the Gaucher gene while 1 in 450 are affected by the disease. Signs/symptoms of Gaucher disease include one or more of the following: Fatigue, bone pain and easily fractured bones, enlarged abdomen and/or spleen, easy bruising or bleeding If left untreated, Gaucher disease can be: disabling and debilitating and lead to premature death As a key opinion leader in the Jewish community, we are asking you to help us develop and implement an action plan to significantly raise awareness about Gaucher and other Jewish genetic diseases. You will be provided with multi-media, take-home tools to help build awareness in your own communities. Where: When: th The Jewish Community Center, 334 Amsterdam Avenue (76 Street), Manhattan, NY September 12, 2006, from 10 a.m. to 12 Noon A kosher deli luncheon will be served. th Contact: Space is limited, so please RSVP to Gena Henderson at 617-937-2584 by August 28 . For more information, please call Gena or visit the NGF website www.gaucherdisease.org. KNOW YOUR HERITAGE PLEDGE CARD Cut out and return to Gena Henderson As a leader in the Jewish community, I, ______________________, pledge to help spread the word about Gaucher disease and the benefits of genetic testing to the members of my community and the organization I represent. Name: ______________________________________________________ Organization: _________________________________________________ E-mail: ____________________________________________Phone: _________________________________ I would like more information about (check all that apply): Scheduling a Genetic Counselor to speak at my organization. ______ Testing/Treatment centers for Gaucher patients _______ National Gaucher Awareness Month _______ Physician Referrals ______ Attn: Gena Henderson 745 Boylston Street 6th Floor Boston, MA 02116 Fax: 617-267-9801 I would like Gaucher collateral materials_______ to share with others. I would also like to receive the FREE Gaucher DVD narrated by Elliott Gould________
National Gaucher Disease Awareness Month Kick-Off September Summit Coalition Know Your Heritage Summit Below is a partial list of key opinion leaders in the Jewish community, who have agreed to help us develop and implement an action plan to significantly raise awareness about Gaucher and other Jewish genetic diseases. At the New York Summit, they will be provided with multi-media, Take-home tools to help build awareness in their own communities. ATIME Rabbi Josh Zern CALIFORNIA CLUB CHABAD Rabbi Halsbad CENTER FOR JEWISH GENETIC DISORDERS Karen Litwak HADASSAH Dale L. Mintz JEWISH ASSOCIATED DISEASE ACTION COMMITTEE Michael Margolis JEWISH GENETIC DISEASES CONSORTIUM MAIMONIDES MEDICAL CENTER Deborah Rosa, MS, CGC Shifra Krinshpun, MS, CGC MAR JEWISH COMMUNITY CENTER Gary Bomzer NATIONAL GAUCHER FOUNDATION Rhonda Buyers RABBI ISAAC N. TRAININ BIKUR CHOLIM COORDINATING COUNCIL Yoneson Meadows and Rabbi Lauber Become a member of the Coalition to raise awareness of Jewish Genetic diseases. By signing a “Know Your Heritage” pledge card, you are making a valuable contribution to your community and to those who are carriers of, or have Gaucher disease or any other Jewish genetic disease. These organizations and individuals are just a few of the many who have made a committment to their community and to this program. RUSSIAN/JEWISH FEDERATION COMMUNITY TOWERS Stella Davidovich UNITED JEWISH ORGANIZATION Miriam Berman
Page 1 and 2: Gaucher Community News Summer, 2006
Page 3 and 4: In addition, the National Gaucher F
Page 5 and 6: Scheduled Events for September 2006
Page 7: NGF National Publications Overview
Page 11 and 12: Join Us At The Carnival For Family
Page 13 and 14: Suzanne Krupskas is a registered ph
Page 15 and 16: Gaucher Awareness Online Auction Th
Page 17 and 18: In Memory Of Sam Bayliss by Mrs. Mu
Page 19 and 20: Genetic Alliance Announces 2006 Awa
Page 21 and 22: Webhits to NGF Site The chart below
Page 23 and 24: This ad, called the “Younger/Coll

Gaucher Community News - National Gaucher Foundation

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