Finding support is an important component in improving the quality of life for those diagnosed with dystonia. With their permission, we are pleased to provide a list of support groups affiliated with the Dystonia Medical Research Foundation (DMRF). For more information about forming groups in your area, please contact the DMRF at 800-377-3978 or dystonia@dystonia-foundation.org.

Dystonia Support Groups Listed by State

Arizona

Phoenix Area Dystonia Support Group
Bob and Virginia Spencer
Prescott, AZ
docandginny@gmail.com
928-777-9844

California

Central California Dystonia Support Group
Holly Machado
Fresno, CA
machadofamily@att.net
559-273-8997

Fairfield, CA Dystonia Support Group
Carol Flynn
Fairfield, CA
caflynns@gmail.com
707-429-9668

Los Angeles Dystonia Support Group
http://www.dystoniaoflosangeles.com
Janis Eiler
Los Angeles , CA
morganeiler23@gmail.com

Von Cashman
Los Angeles , CA
voncashman@verizon.net
562-860-4576

North Bay Dystonia Support Group
http://www.knapp-frazer.com/dystonia
Peggy Knapp
Santa Rosa, CA
m-knapp@pacbell.net
707-539-6621

Jo-Anne Rosen
Petaluma , CA
jo@wordrunner.com
Office: 707-789-0787

Support and Advocacy Group of San Diego County
http://www.dystoniaofsandiego.com/
Martha Murphy
San Diego, CA
mmurphy582@gmail.com
619-582-1961

Connecticut

Central Connecticut Dystonia Support Group
Larry Stahl
West Hartford , CT
artscifi2@sbcglobal.net
860-233-1965

Southern Connecticut Dystonia Support Group
Carol Smith
Greenwich, CT
joysmithc@gmail.com

Florida

Tampa Bay Support Group
Val and Ernie Inman
Tampa, FL
tbdystonia@yahoo.com
813-395-8446

Iowa

East Central Iowa Dystonia Support Group
Sheila Williams
Marion, IA
dystonia4u@yahoo.com

Quad City Support Group
Cyndy Bauer
Eldridge, IA
cabauer42@aol.com
563-285-4688

Michigan

Greater Metro Detroit, MI Dystonia Support Group
Rosemary Young
Detroit , MI
MIDYSTONIAAWARENESS@yahoo.com

Mid-Michigan Dystonia Support Group
Gina R. Saucedo
Lansing, MI
grsdgp@gmail.com
517-652-4087

North East Michigan Dystonia Support Group
John Hippensteel
Alpena, MI
hippensteelj@charter.net
989-464-3129

Michigan Tri-Cities Dystonia Support Group
Deborah Davis
Bay City, MI  48706
DebDavis1@earthlink.net
(989) 980-2233
www.facebook.com/groups/ 1067373166638186/

Minnesota

Minnesota Dystonia Support Group
Elizabeth Schultz
Minneapolis , MN
612-889-7416

New Jersey

Central Jersey Dystonia Support & Action Group
Janice & Len Nachbar
Freehold, NJ
cjdystonia@aol.com
732-547-3322

New Mexico

New Mexico Dystonia Support Group
A.J. Deguio
Albuquerque, NM
505-298-6129

New York

NY Dystonia Outreach and Support Group of Hudson Valley
Irene Morrissey
Valatie , NY
imorrissey@nycap.rr.com
518-758-7275

NYC Adult Dystonia Support Group Meeting
Pamela Sloate
New York, NY
pamsloate@yahoo.com

Southern Tier Dystonia Support Group
Jennifer Kassis
Vestal, NY
jstark19@aol.com
607-821-8986

Oregon

Portland, OR & Southwest WA Support Group
Dee Linde
Canby, OR
phoenixrising@canby.com
503-266-5927

Central Oregon Dystonia Support Group
Pat Croll
Bend, OR
pnjcroll@bendcable.com
541-388-2577

Pennsylvania

Central Pennsylvania Dystonia Support Group
Violet Klinger
Middleburg, PA
vklinger@verizon.net
570-837-0457

Dystonia Support & Action Group of Philadelphia
Janice & Len Nachbar
Philadelphia, PA
cjdystonia@aol.com
732-547-3322

Southeast Pennsylvania Support Group
Raman Patel
West Chester, PA
ramanpatel67@gmail.com
610-431-2199

 

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