APPENDIX B
Support Organizations
GENERAL MOVEMENT DISORDERS
WE MOVE – Worldwide Education and Awareness for Movement Disorders WE MOVE is a not-for-profit organization dedicated to educating and informing patients, professionals, and the public about the latest clinical advances, management, and treatment options for neurologic movement disorders.
WE MOVE
5731 Mosholu Avenue
Bronx, NY 10471
E-mail: wemove@wemove.org
FOR DEEP BRAIN STIMULATION
DBS-STN.org A website focused on improving quality of life in the DBS-STN community.
DBS-STN.org
The Parkinson Alliance
Post Office Box 308
Kingston, NJ 08528-0308
Phone: 1-800-579-8440
FOR PARKINSON’S DISEASE
American Parkinson Disease Association A grassroots organization dedicated to easing the burden and finding a cure for Parkinson’s disease.
National Office
135 Parkinson Avenue
Staten Island, NY 10305
Phone: 1-800-223-2732 or 718-981-8001
Fax: 718-981-4399
E-mail: apda@apdaparkinson.org
The Michael J. Fox Foundation The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today.
The Michael J. Fox Foundation for Parkinson’s Research
Church Street Station
P.O. Box 780
New York, NY 10008-0780
Contact: 1-800-708-7644
E-mail: info@michaeljfox.org
National Parkinson Foundation The National Parkinson Foundation works every day to improve the quality of Parkinson’s care through research, education, and outreach.
National Parkinson Foundation, Inc.
1501 N.W. 9th Avenue/Bob Hope Road
Miami, FL 33136-1494
Toll-free Helpline: 1-800-4PD-INFO (473-4636)
National Headquarters: 1-800-327-4545
E-mail: contact@parkinson.org
Parkinson’s Disease Foundation (PDF) The PDF works by funding promising scientific research to find the causes of and a cure for Parkinson’s while supporting people with Parkinson’s, their families, and caregivers through educational programs and support
services.
Main Office
1359 Broadway, Suite 1509
New York, NY 10018
Phone: 212-923-4700
Toll-free Helpline: 800-457-6676
E-mail: info@pdf.org
FOR ESSENTIAL TREMOR
International Essential Tremor Foundation (IETF) A nonprofit organization dedicated to providing global educational information, services, and support to those affected by essential tremor, and to health care providers, while promoting and funding essential tremor research.
IETF
PO Box 14005
Lenexa, KS 66285-4005
Toll-free Phone: 888-387-3667
E-mail: info@essentialtremor.org
http://www.essentialtremor.org/Contact-Us
Tremor Action Network A volunteer nonprofit organization founded by people diagnosed with essential tremor, cervical dystonia (spasmodic torticollis), and tremor-related neurological movement disorders to spread awareness of essential tremor and tremor-related neurological movement disorders by advocating for a cure through research.
Tremor Action Network
P.O. Box 5013
Pleasanton, CA 94566
Phone: 510-681-6565
FOR DYSTONIA
Benign Essential Blepharospasm Research Foundation A nonprofit foundation whose purpose is to undertake, promote, develop, and carry on the search for the cause and a cure for benign essential blepharospasm and other related disorders and infirmities of the facial musculature.
Benign Essential Blepharospasm Research Foundation
P.O. Box 12468
Beaumont, TX 77726-2468
Tel: 409-832-0788
E-mail: bebrf@blepharospasm.org
http://www.blepharospasm.org/bebrf.html
Dystonia Medical Research Foundation (DMRF) The DMRF is a nonprofit organization dedicated to serving all people with dystonia and their families.
Dystonia Medical Research Foundation
One East Wacker Drive, Suite 2810
Chicago, IL 60601-1905
Phone: 312-755-0198
Toll free: 800-377-DYST (3978)
Fax: 312-803-0138
E-mail: dystonia@dystonia-foundation.org
http://www.dystonia-foundation.org
National Spasmodic Torticollis Association The mission of the National Spasmodic Torticollis Association is to support the needs and well being of affected individuals and families; to promote awareness and education; and to advance research for more treatments and ultimately a cure.
NSTA Hotline: 1-800-487-8385
E-mail: NSTAmail@aol.com
http://www.torticollis.org/contact-nsta.html
ST/Dystonia ST/Dystonia is a nonprofit organization dedicated to helping people with spasmodic torticollis (ST) or cervical dystonia.
ST/Dystonia
P.O. Box 28
Mukwonago, WI 53149
Phone: 262-560-9534
Toll-free: 888-445-4588
Fax: 262-560-9535