Gaucher Community News - National Gaucher Foundation

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________