Following is a list of organizations and websites with information related to treatment and resources in managing Parkinson’s Disease, dystonia, and other neuromuscular problems treated by our movement disorder specialists. Although these sites have been selected by Neurology Solutions’ editorial staff to be contained on the NSC website, they are not operated by NSC. Thus, NSC cannot be responsible for publishings on these sites. Please refer to individual site publishers for additional information. If you have questions about anything you read on movement disorders sites, be sure to bring them up with your Austin neurologist during your appointment.
Capital Area Parkinson’s Society
P.O.Box 27565
Austin, TX 78755-2565
(512) 288-4087 or (512) 308 1037
Email: info@capitalareaparkinsons.org
Website: http://capitalareaparkinsons.org
The Shy-Drager Syndrome/Multiple System Atrophy Support Group
Contact: Don Summers
P.O. Box 279
Austin, Coupland, TX 78615 USA
TEL: (866) 737-4999
FAX: (512) 251-3315
E-mail: Don.Summers@shy-drager.org
Website: http://www.shy-drager.org/
AGE of Central Texas Caregiver Resource Center
3710 Cedar St.
Austin, TX 78705
TEL: 512-451-4611
E-mail: info@ageofcentraltx.org
Website: http://www.ageofcentraltx.org/caregiver.php
Dystonia Medical Research Foundation
One East Wacker Drive, Box 2810
Chicago, IL 60681 USA
TEL: 800-377-DYST (3978)
FAX: 312-803-0138
E-mail: dystonia@dystonia-foundation.org
Website: https://www.dystonia-foundation.org/
Power for Parkinson’s
10900 Research Blvd.
Suite 160 C
(512) 288-4087 or (512) 308 1037
Austin, TX 78759
Email: powerforparkinsons@gmail.com
Website: http://www.powerforparkinsons.org
American Parkinson’s Disease Assoc., Inc.
Contact: G. Maestrone
1250 Hylan Boulevard
Staten Island, NY 10305 USA
TEL: (800) 223-2732 or (718) 981-8001
FAX: (718) 981-4399
E-mail: apda@apdaparkinson.org
Website: http://www.apdaparkinson.org
Bachmann-Strauss Dystonia & Parkinson Foundation, Inc.
One Gustave L. Levy Place, Box 1490
New York, NY 10029 USA
TEL: (212) 241-5614
FAX: (212) 987-0662
E-mail: Bachmann.Strauss@mssm.edu
Website: http://www.dystonia-parkinsons.org
Michael J. Fox Foundation for Parkinson’s Research
20 Exchange Place, Suite 3200
New York, NY 10005 USA
TEL: (212) 509-1650
FAX: (212) 509-2390
Website: http://www.michaeljfox.org
Parkinson’s Foundation
200 SE 1st St.
Miami, FL 33136 USA
TEL: (305) 243-6666 or (800) 327-4545
FAX: (305) 243-6073
E-mail: contact@parkinson.org
Website: http://www.parkinsonsfoundation.org
University of California Leonard Davis School of Gerontology
3715 McClintock Ave.
Los Angeles, CA 90089 USA
TEL: (213) 740-5156
E-mail: ldsgero@usc.edu
Website: http://gerontology.usc.edu/resources/
Cerebral Palsy Guide
3208 East Colonial Drive, Suite 241
Orlando, FL 32803 USA
TEL: 855-329-1008
E-mail: contact@cerebralpalsyguide.com
Website: http://www.cerebralpalsyguide.com
Parkinson Association of the Carolinas
601 East Fifth Street, Suite 140
Charlotte, NC 28202 USA
TEL: 704-248-3722
FAX: 704-943-3748
Website: http://www.parkinsonassociation.org
Parkinson Foundation of the Heartland
Contact: Meg Duggan
7800 Foster
Overland Park, KS 66204-2955 USA
TEL: 913-341-8828
FAX: 913-341-8885
E-mail: meg@parkinsonheartland.org
Website: http://www.parkinsonhearthland.org
Parkinson’s Action Network (PAN)
Contact: Amy Comstock
1025 Vermont Avenue NW, Suite 1120
Washington, DC, 20005 USA
TEL: (202) 638-4101; (800) 850-4726
FAX: (202) 638-7257
E-mail: info@parkinsonsaction.org
Website: http://www.parkinsonsaction.org
The Parkinson Alliance
Contact: Carol Walton, Executive Director
Post Office Box 308
Kingston, New Jersey 08528-0308 USA
TEL: 1-800-579-8440
FAX: (609) 688-0875
E-mail: admin@parkinsonalliance.org
Website: http://www.parkinsonalliance.org
Young Onset Parkinson’s Association
Contact: Doug Scott, Executive Director
111 Shawnee Loop North
Pataskala, Ohio 43062-8123 USA
TEL: 866-869-YOPA
FAX: 866-869-9672
E-mail: directors@yopa.org
Website: http://www.yopa.org
Partners in Parkinson’s
A strategic health initiative of The Michael J. Fox Foundation for Parkinson’s Research and AbbVie
E-mail: info@PartnersinParkinsons.org
Website: http://www.partnersinarksinsons.org
Cerebral Palsy Group
400 Putnam Pike, Suite J #242
Smithfield, RI 02917 USA
TEL: (774) 325 0083
E-mail: alisons@cerebralpalsygroup.com
Website: https://cerebralpalsygroup.com
Ataxia MJD Research Project, Inc.
Contact: Laura Denning
1425 Alvarado Avenue
Burlingame, CA 94010 USA
TEL: (650) 347-0362
E-mail: LDenning@ataxiamjd.org
Website: http://www.ataxiamjd.org
Ataxia MJD Research Project, Inc.
Contact: Laura Denning
1425 Alvarado Avenue
Burlingame, CA 94010 USA
TEL: (650) 347-0362
E-mail: LDenning@ataxiamjd.org
Website: http://www.ataxiamjd.org
National Ataxia Foundation
Contact: Michael Parent
2600 Fernbrook Lane, Suite 119
Minneapolis, MN 55447-4752 USA
TEL: (763) 553-0020
FAX: (763) 553-0167
E-mail: naf@ataxia.org
Website: http://www.ataxia.org
Christopher and Dana Reeve Paralysis Resource Center
Contact: Linda M. LoCasale, Director of Operations
636 Morris Turnpike, Suite #3A
Short Hills , NJ 07078 USA
TEL: (800) 539-7309 or (973) 467-8270
FAX: (973) 467-9845
E-mail: prc@crpf.org
Website: http://www.paralysis.org
Pediatric Neurotransmitter Disease Association
Contact: Nancy Speller
6 Nathan Drive
Plainview, NY 11803 USA
TEL: (516) 937-0049
FAX: (516) 937-0049
E-mail: PND@PNDAssoc.org
Website: http://www.pndassoc.org
PICK
Parents of Infants and Children with Kernicterus
Contact: Karen Dixon, Ph.D
One W. Superior St., Suite 2410
Chicago, IL 60610 USA
TEL: 205-705-6524
E-mail: kdixon@uab.edu
Website: http://www.PICKonline.org
Reflex Sympathetic Dystrophy Syndrome Association of America
PO Box 502
Milford, CT 06460 USA
TEL: (203) 877-3790
FAX: (203) 882-8362
E-mail: info@rsds.org
Website: http://www.rsds.org
Spastic Paraplegia Foundation
Contact: Kathi Geisler, Vice President
11 Douglas Green
Woburn, MA 01801 USA
TEL: 703-495-9261
E-mail: info@sp-foundation.org
Website: http://www.sp-foundation.org
United Mitochondrial Disease Foundation (UMDF)
Contact: UMDF
8085 Saltsburg Road, Suite 201
Pittsburgh, PA 15239 USA
TEL: (412) 793-8077
FAX: (412) 793-6477
E-mail: info@umdf.org
Website: http://www.umdf.org
Benign Essential Blepharospasm Research Foundation, Inc.
Contact: Mary Lou Thompson
PO Box 12468
Beaumont, Texas 77726-2468 USA
TEL: (409) 832-0788
FAX: (409) 832-0890
E-mail: bebrf@blepharospasm.org
Website: http://www.blepharospasm.org/
Care4Dystonia, Inc.
Contact: Beka Serdans, RN, MSN
440 East 78th Street; Suite 4F
New York, NY 10021 USA
E-mail: infoc4d@aol.com
Website: http://www.care4dystonia.org
National Spasmodic Dysphonia Association
Contact: Dysphonia Association
300 Park Blvd; Suite 350
Itasca, IL 60143 USA
TEL: (800) 795-NSDA
E-mail: NSDA@dysphonia.org
Website: http://www.dysphonia.org
National Spasmodic Torticollis Association
9920 Talbert Avenue
Fountain Valley, CA 92708 USA
TEL: (800) HURTFUL
E-mail: nstamail@aol.com
Website: http://www.torticollis.org
Spasmodic Torticollis/Dystonia, Inc.
Contact: Howard Thiel
P.O. Box 28
Mukwonago, WI 53149 USA
TEL: (888) 445-4598
E-mail: info@spasmodictorticollis.org
Website: http://www.spasmodictorticollis.org
Benign Essential Blepharospasm Research Foundation, Inc.
Contact: Mary Lou Thompson
PO Box 12468
Beaumont, Texas 77726-2468 USA
TEL: (409) 832-0788
FAX: (409) 832-0890
E-mail: bebrf@blepharospasm.org
Website: http://www.blepharospasm.org/
Huntington’s Disease Society of America
Contact: Barbara T. Boyle
158 West 29th Street, 7th Floor
New York, NY 10001-5300 USA
TEL: (800) 345-HDSA / (212) 242-1968
FAX: (212) 239-3430
E-mail: hdsainfo@hdsa.org
Website: http://www.hdsa.org
The Sarah Matheson Trust
Contact: Pickering Unit
St. Mary’s Hospital, Praed Street
London W2 1NY UK
TEL: (44) 207 8 861 520
FAX: (44) 207 8 861 540
Website: http://www.msaweb.co.uk
Restless Legs Syndrome Foundation
819 Second Street SW
Rochester, MN 55902 USA
TEL: (507) 287-6465
FAX: (507) 287-6312
E-mail: rlsfoundation@rls.org
Website: http://www.rls.org
International Rett Syndrome Association
Contact: Kathy Hunter
9121 Piscataway Road, Suite 2B
Clinton, Maryland 20735 USA
TEL: (301) 856-3334
FAX: (301) 856-3336
E-mail: khunter@rettsyndrome.org
Website: http://www.rettsyndrome.org
Rett Syndrome Research Foundation
4600 Devitt Drive
Cincinnati, OH 45246 USA
TEL: (513) 874-3020
FAX: (513) 874-2520
E-mail: monica@rsrf.org
Website: http://www.rsrf.org
American Stroke Association
A Division of American Heart Association
7272 Greenville Avenue
Dallas, TX 75231 USA
TEL: (888) 4 STROKE
FAX: (800) 787-8985
E-mail: strokeassociation@heart.org
Website: http://www.StrokeAssociation.org
Brain Injury Association of America
Contact: Family Helpline
105 North Alfred Street
Alexandria, VA 22314 USA
TEL: (800) 444-6443
FAX: (703) 236-6001
E-mail: PublicRelations@biausa.org
Website: http://www.biausa.org
Multiple Sclerosis Association of America
Contact: Susan Freund
706 Haddonfield Road
Cherry Hill, NJ 08002 USA
TEL: (800) 833-4MSA(4672)
FAX: (609) 661-9797
E-mail: msaa@msaa.com
Website: http://www.msaa.com
Multiple Sclerosis Foundation
6350 N. Andrews Avenue
Ft. Lauderdale, FL 33309 USA
TEL: (800) 441-7055 or (954) 776-6805
FAX: (954) 938-8708
E-mail: support@msfacts.org
Website: http://www.msfacts.org
National Multiple Sclerosis Society
733 3rd Avenue, 6th Floor
New York, NY 10017-3288 USA
TEL: (800) FIGHT MS (344-4867) or (212) 986-3240
FAX: (212) 986-7981
E-mail: info@nmss.org
Website: http://www.nmss.org
National Spinal Cord Injury Association
Contact: Charlene Frazier, RN, MS
6701 Democracy Boulevard
Bethesda, MD 20817 USA
TEL: (800) 962-9629 or (301) 588-6959
FAX: (301) 214-4006
E-mail: info@spinalcord.org
Website: http://www.spinalcord.org
National Stroke Association
9707 E. Easter Lane
Englewood, CO 80112 USA
TEL: (800) STROKES or (303) 649-9299
FAX: 303-649-1328
Website: http://www.stroke.org
Stroke Club International
Contact: Ellis Williamson
805 12th Street
Galveston, TX 77550 USA
TEL: (409) 762-1022
E-mail: strokeclub@aol.com
United Cerebral Palsy Associations
Contact: Margaret Lavigne
1660 ‘L’ Street NW, Suite 700
Washington, DC 20036 USA
TEL: (800) USA 5UCP or (202) 842-1226
FAX: (202) 842-3519
E-mail: infoucp@aol.com
Website: http://www.ucpa.org