Chicago Center for Jewish Genetics Disorders - Resources for Individuals and Families

Chicago Center for Jewish Genetic Disorders
Section: Resources for Individuals and Families
Associations and Foundations

Genetics & Genetic Diseases: Associations & Foundations

Jews are at risk for certain genetic diseases. The following organizations are devoted to community awareness and research of these disorders. For more information, or to find out about testing sites, please contact the appropriate organizations listed below. Also consult your doctor.

Bloom's SYNDROME

Bloom's Syndrome Registry
The New York Blood Center
Laboratory of Molecular Genetics
310 East 67th Street
New York, NY 10021
Phone: (212) 570-3075
Fax: (212) 570-3195
Email: jlg2003@med.cornell.edu

CANAVAN DISEASE

Canavan Foundation
110 Riverside Drive #4F
New York, NY 10024
Phone: (212) 873-4640
Toll Free: (877) 4-canavan
Fax: (212) 873-7892
E-mail: info@canavanfoundation.org
Website: www.canavanfoundation.org

Canavan Research Foundation
88 Route 37
New Fairfield, CT 06812
Phone: (203) 746-2436
Fax: (203) 746-3205
Email: info@canavan.org
Website: www.canavan.org

Canavan Research Illinois
P. O. Box 8194
Rolling Meadows, IL 60067
Phone: (800) 833-2194
Phone 2: (847) 222-0736
Email: canavan@canavanresearch.org
Website: http://www.canavanresearch.org
A 501( c ) ( 3 ) charity, based in Illinois, dedicated
to funding medical research to cure Canavan
disease, network affecting families, and raise
awareness of carrier testing for this fatal childhood
neurodegenerative disease.

United Leukodystrophy Foundation
Canavan Disease
2304 Highland Drive
Sycamore, IL 60178
Phone: (815) 895-3211
Phone 2: (800) 728-5483
Fax: (815) 895-2432
Email: ulf@tbc.net.com
Website: http://www.ulf.org
Contact: Paula Brazeal

DYSAUTONOMIA

Dysautonomia Foundation Inc.
315 W 39th Street, Suite 701
New York, NY 10018
Phone: (212) 279-1066
Email: info@familialdysautonomia.org
Website: www.familialdysautonomia.org

Familial Dysautonomia Hope Foundation (FD Hope)
110 Deerwood Court
Chapel Hill, NC 27517
(828) 238-3149
Email: info@fdhope.org
Website: www.fdhope.org

National Dysautonomia Research Foundation
421 West Fourth Street, Suite #9
Red Wing, MN 55066-2555
Phone: 651/267-0525
Fax: 651/267-0524
Email: ndrf@ndrf.org
Website: www.ndrf.org

DYSTONIA

Dystonia Medical Research Foundation
One East Wacker Drive
Suite 2430
Chicago, IL 60601
Phone: (312) 755-0198
In Canada: (800) 361-8061
Fax: (312) 803-0138
Email: dystonia@dystonia-foundation.org
Website: http://www.dystonia-foundation.org

Bachman-Strauss Dystonia & Parkinson Foundation
Mount Sinai Medical Center
One Gustave Levy Place Box 1490
New York, NY 10029
Phone: (212) 241-5614
Fax: (212) 987-0662
Email: bachmann.strauss@mssm.edu
Website: www.dystonia-parkinsons.org

FANCONI ANEMIA

Fanconi Anemia Research Fund, Inc.
1801 Willamette Street, Suite #200
Eugene, OR 97401
Phone: (541) 687-4658
Fax: (541) 687-0548
E-mail: info@fanconi.org
Website: www.fanconi.org

GAUCHER DISEASE

National Gaucher Foundation
61 General Early Drive
Harpers Ferry, WV 25425
Phone: (800) 925-8885
Fax: (304) 725-6429
Email: ngf@gaucherdisease.org
Website: http://www.gaucherdisease.org
Contact: Sharon Adams

MUCOLIPIDOSIS IV

ML4 Foundation
719 East 17th Street
Brooklyn, NY 11230
Phone: (718) 434-5067
Fax: (718) 859-7371
Email: ml4www@aol.com
Website: www.ml4.org

NIEMANN-PICK DISEASE

National Niemann-Pick Disease Foundation
22201 Riverpoint Trail
Carrollton, VA 23314
Phone: (804) 357-6774

National Niemann-Pick Foundation
PO Box 49 415 Madison Avenue
Ft. Atkinson, WI 53538
Phone: (920) 563-0930
Toll Free: (877) CURE-NPC
Fax: (920) 563-0931
Email: nnpdf@idcnet.com
Website: www.nnpdf.org

TAY-SACHS DISEASE

National Tay-Sachs and Allied Diseases Foundation
(NTSAD)
2001 Beacon Street
Suite 204
Brighton, MA 02135
Phone: (800) 906-8723
Phone 2: (617) 277-4463
Fax: (617) 277-0134
Email: info@ntsad.org
Website: http://www.ntsad.org
Contact: Jayne Gerskowitz
Dedicated to treatment and prevention of Tay-
Sachs, Canavan and related diseases. Information
and services to individuals and families. Public and
professional education, research, genetic screening,
family services and advocacy.

Tay-Sachs and Allied Diseases Delaware Valley
101 Greenwood Avenue, Suite 570
Jenkintown, PA 19046
Phone: (215) 887-0877
Fax: (215) 887-1931
Email: NTSAD@aol.com
Website: www.tay-sachs.org

National Tay-Sachs & Allied Diseases Association New York Area
1202 Lexington Avenue, #288
New York, NY 10028
(888) 354-7788 (toll free)
(212) 431-0431
fax: 888-354-4884
www.ntsad-ny.org

OTHER JEWISH GENETIC DISORDER ASSOCIATIONS & FOUNDATIONS

National Foundation for Jewish Genetic Diseases
250 Park Avenue
Suite 1000
New York, NY 10177
Phone: (212) 371-1030
Fax: (212) 319-5808

Other Genetic Associations & Foundations

March of Dimes
Greater Illinois Chapter
111 West Jackson Street
22nd Floor
Chicago, IL 60604
Phone: (312) 435-4007
Fax: (312) 435-0988
Contact: Gail Wilson, Executive Director
Email: gwilson2@modimes.org
Website: http://modimes.org or
http://www.marchofdimesillinois.org
A national voluntary health agency whose mission is
to improve the health of babies by preventing birth
defects and infant mortality. Founded in 1938, the
March of Dimes funds programs of research,
community services, education, and advocacy to
save babies.

National MPS Society (Mucopolysacchaudoses)
102 Aspen Drive
Downingtown, PA 19335
Phone: (610) 942-0100
Fax : (610) 942-7188
Email: info@mpssociety.org
Website: http://www.mpssociety.org
Contact: Barbara Wedehase, Executive Director

National Tuberous Sclerosis Association
8181 Professional Plaza
Suite 110
Landover, MD 20785
Phone: (800) 225-6872
Email: Info@tsalliance.org
Website: http://www.ntsa.org
Information and referral, facilitates contact between
families, sponsors genetic research projects.

This page last updated on September 6, 2007.