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In Person Support Meetings USA and Canada
THE MULTIPLE SYSTEM ATROPHY (MSA) COALITION, INC.
9935-D Rea Road #212, Charlotte, NC 28277 USAwww.MultipleSystemAtrophy.org
Toll free: 1-866-737-4999 or 1-866-737-5999Contact Us or Find us on Facebook
DONATE NOW
“United to Defeat MULTIPLE SYTEM ATROPHY”
The Multiple System Atrophy (MSA) CoalitionTM is a 501(c)3 charitable organization(EIN: 74-2926378) devoted to a four pillar mission:
• Supporting patients and caregivers affected by multiple system atrophy• Educating patients, caregivers and healthcare professionals• Financing and facilitating research aimed to identify a cause and find a cure for MSA• Advocating for issues important to the MSA community, including creating greater awareness
SUPPORTThe Multiple System Atrophy Coalition offers a toll free support line staffed by former MSA caregivers.
Contact: Larry Kellerman Toll free US and Canada: [email protected]
Please Visit our MSA Resources Page
EDUCATIONThe MSA Coalition hosts an annual conference for MSA patients and families (usually October) in a different US city each year.
See our YouTube Channel for past conference recordings. DVD’s of past conferences are available to order, just Contact UsDownload: “MSA - What you Need to Know”
RESEARCHThe Multiple System Atrophy Coalition is the leading nonprofit funder of global MSA research. Since 2013 we have funded over $1.25 million in research projects. Find out more here.
Patients please register in the Global MSA Registry
ADVOCACY & AWARENESSThe MSA Coalition highlights the month of March as MSA Awareness Month and October 3rd as World MSA Day. As a member of the National Organization for Rare Disorders and the Coalition of Patient Advocacy Groups we stay abreast of issues important to the MSA community.
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This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
In Person Support Meetings USA and Canada
BOARD OF DIRECTORS
Chair Cynthia Roemer Howell NJ USA 866-737-4999 x207
Vice Chair Don Crouse Charlotte NC USA 866-737-4999 x203
Treasurer Carol Langer Boston MA USA 866-737-4999 x205
Secretary Pam Bower Halifax NS CANADA 866-737-4999 x204
Patient Representative
Hadley Ferguson Missoula MT USA [email protected]
Philip Fortier Detroit MI USA 866-737-4999 x206
Larry Kellerman Washington IL USA 866-737-4999 x209
Steve Klisares Dunlap IL USA [email protected] Versel Chicago IL USA [email protected]
Chair Emeritus Judy Biedenharn Grove City OH USA 866-737-4999 x201
SCIENTIFIC ADVISORY BOARD
Chair David Robertson, M.D. Nashville TN USA [email protected] Thomas Chelimsky, M.D. Milwaukee WI USA [email protected] Phillip Low, M.D. Rochester MN USA [email protected] Steven Vernino, M.D., Ph.D. Dallas TX USA [email protected] Gregor K. Wenning, M.D., Ph.D. Innsbruck Austria [email protected]
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This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
In Person Support Meetings USA and Canada
Note: The following list represents support groups compiled by the MSA Coalition that are designated for individuals dealing with MSA and/or other related neurological disorders. In our effort to support MSA patients and their care partners everywhere, we are pleased to provide information and resources about MSA to all the groups listed. We
welcome friendships with all, especially groups and organizations that offer support to those diagnosed with autonomic and movement disorders. Every effort is made to ensure meeting times & dates are accurate, however
we do suggest that you contact the facilitator first before attending a meeting for the first time.
UNITED STATES
ALABAMA
CHICKASAWInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Janiece Naber Martindale 251-300-1196 [email protected]
ARKANSAS
LITTLE ROCKInformation updated as of Dec 2016: For anyone affected by PSP, CBD or MSALocation: Alzheimer’s Arkansas 201 Markham Center Drive, Little Rock, AR 72205 (ask front desk for room details, 501-224-0021Meeting Time: 4th Thursday of every months from 1:00pm-2:30pmFacilitator: Randi Haley 870-703-6417 [email protected]
ARIZONA
GILBERTInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Tandy King www.facebook.com/kingchtata
CALIFORNIA BAKERSFIELD Information updated as of Dec 2016: Anyone affected by PSP, CBD, MSA Location: Denny’s restaurant, Banquet Room, 8710 Rosedale Highway, Bakersfield CA Meeting Time: 1st Wednesday of every month from 1:00pm-3:00pm Facilitator: Cathy Nichols 661-829-5552 [email protected] BURLINGAME
Information updated as of Dec 2016: No Meeting Phone/email Support Only
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In Person Support Meetings USA and Canada
Contact: Candy Welsh 650-218-5858 [email protected]
FOUNTAIN VALLEY Information updated as of Dec 2016: For family members and caregivers dealing with Atypical PD+ DisordersLocation: Orange coast Memorial Medical Center, Classroom C, 9920 Talbert Ave, Fountain Valley, CA 92708Facilitator: Justin Aquines 714-907-0074 [email protected]
FREMONTNon-profit for MSACure MSA – Kathy Shih Memorial FoundationP.O. Box 15088Fremont, CA 94539 USAwww.curemsa.org
Contact: Lily Shih (Executive Director) 510-226-0453 [email protected]
FREMONTInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Sandy Bierman 510-656-6897 [email protected]
Lily Shih 510-226-0453 [email protected]
GOLETAInformation updated as of Dec 2016: No Meeting Phone/email Support Only after 11am ESTContact: George Relles 805-683-4829 [email protected]
IRVINEInformation updated as of Dec 2016: For patients, caregivers and families affected by Parkinson’s, PSP, CBD, MSA and other atypical Parkinsonian disorders.Location: Atria Woodbridge Assisted Living, 1 Witherspoon, Irvine CA 92604Meeting Time: Every Tuesday 10:30am -12:00pmLocation: Lakeview Senior Center, 20 Lake Road, Irvine, CA 92604 Facilitator: Don Perdue 949-552-0465 [email protected]
LIVERMOREInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Carol Dutcher 925-998-3656 [email protected]
LOS ANGELESInformation updated as of Dec 2016: The Los Angeles Parkinsonian Disorders Support for people with PSP, CBD, MSA, and PD and their family members & friends
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In Person Support Meetings USA and Canada
Location: UCLA Medical Plaza Bldg. 300 in the Marisa Leif Conference Room on the 3rd floor, Los Angeles, Calif. Meeting Time: 1st Friday of every month from 2:00pm-4:00pm Facilitator: Loretta Mazorra RN, NP, MN, MA [email protected] RSVP and for Further Information contact Dolly West [email protected] or phone: 310-206-2154.
MODESTOInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Janeice Partridge [email protected]
NORTHERN/SAN MATEOInformation updated as of Dec 2016: Neurodegenerative movement disorder group (MSA PSP,
CBD, etc.) – caregivers only. Contact facilitator for more info.Location: Mimi's Cafe, 2208 Bridgepointe Parkway, San Mateo, CA 94404Meeting Time(s): Every six weeks (call or e-mail for schedule) from 5:00pm - 7:00pmFacilitator: Robin Riddle 650-814-0848 [email protected]
SACRAMENTO Information updated as of Dec 2016: For caregivers dealing with PSP, CBD, MSA and Parkinson’s
Location: Shriner’s Hospital on the UC Davis Medical Center Campus, 7 th Floor Board Room, 2425 Stockton Blvd, Sacramento, CA Meeting Time 4th Wednesday of every month 7:00pm-9:00pm
Facilitator: Edward Fargusson. He can be reached through the Alzheimers Association Sacramento Phone: 916-930-9080
SAN DIEGOInformation updated as of Dec 2016: For patients/caregivers dealing with Atypical Parkinsonian
Disorders like MSA, PSP, CBD, OPCA, SND, SDSLocation: University of California San Diego (UCSD), East Campus, Medical Center Modular 1 (MCM1) Room 140 (conference room) 9423 Health Sciences Dr, La Jolla, CA 92037Meeting Time(s): Third Monday of each month at 1 pmFacilitator: Darlene Gerow 619-806-9649 [email protected]
SAN DIEGOInformation updated as of Dec 2016: For ONLY caregivers dealing with Atypical Parkinson Disorders (MSA, PSP, CBD, OPCA)Location: Conference RM Tri City Wellness Center, 6250 El Camino Real, Carlsbad, CA 92009 Meeting Time(s): Every other month on the first Wednesday from 11:00am - 1:00pm Facilitator: Judy Chamuler 619-788-3584 [email protected]
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In Person Support Meetings USA and Canada
SANTA BARBARA Information updated as of Dec 2016: No Meeting Phone/email Support Only
Contact: Suzanne Grimmesey 805-455-5194 [email protected]
COLORADO
DENVER/ENGLEWOODInformation updated as of Dec 2016: Neurodegenerative movement disorder group (MSA, PSP, CBD)Location: Johnson Adult Day Center, 3444 South Emerson St., Englewood, CO 80113
Meeting Time(s): 2nd Friday of each month from 10:00am - 12:00pm for Patients/Caregivers 4th Friday of each month from 10:00am-12:00pm for Caregivers only
Facilitator: Helenn Franzgrote 303-789-9900 [email protected]
JOHNSTOWN/LOVELANDInformation: MSA, PSP, CBD Support GroupLocation: Northern Colorado Rehabilitation Hospital 4401 Union Street Johnstown CO 80528Meeting Time: 2nd Friday of each month from 1:00pm - 3:00pmFacilitator: Ruth Fletcher-Carter 970-532-2681 [email protected]
FLORIDA
JACKSONVILLEInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Shirley Snyder 904-207-5501 [email protected]
SOUTHEAST/DEERFIELD BEACHInformation updated as of Dec 2016: For patients/caregivers/families affected by MSA, PSP, CBD and related diseasesLocation: North Broward Medical Center, 201 E. Sample Road, Deerfield Beach, FL 33064
1st Floor, Classrooms 7&8 (for directions only: 954-941-8300)Meeting Time(s): Contact Facilitator for more infoFacilitator: Paul Freeman 305-970-0805 [email protected]
SOUTHWEST/NAPLESInformation updated as of Dec 2016: For patients/caregivers/families affected by MSA, PSP, CBD and related diseasesLocation: Manor Care at Lely Palms, 6135 Rattlesnake Hammock Road, Naples, FL 34113
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In Person Support Meetings USA and Canada
Meeting Time(s): 2nd Saturday of each month from 2:00pm - 3:30pmFacilitator: Cindy MacDonald 239-353-3960/239-404-4429 [email protected] Information updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Tenley Smith 630-337-1314 [email protected]
GEORGIA
ATLANTAInformation updated as of Dec 2016: For care partners only of those living with Atypical Parkinsonism’s, PSP, CBDLocation: Emory Brain Health Center. 12 Executive Park Dr. Room 331 C Atlanta, GA Meeting Time(s): 2nd Saturday of each month from 10:00am – 11:30amFacilitator: Lynn Ross 404-712-7091 [email protected]
ATLANTAInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Kathy Hansen 678-371-5139 [email protected]
ELLIJAYInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Paula Davis 706-669-1978 [email protected]
SMYRNAInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Dan Gallivan [email protected]
HAWAII
HONOLULU Information updated as of Dec 2016: PSP, CBD, MSA or Atypical Parkinson’s Location: Waikiki Banyan 201 Ohua Ave, Honolulu, HI 96815 Meeting Time(s): 2nd Saturday of each month from 10:00am-11:30am Facilitator: Ozzie Boyle 206-793-8648 [email protected]
ILLINOIS
CHICAGO AREA Information updated as of Dec 2016: MSA Support Meeting for Patients/Caregivers
Meeting information: Quarterly meetings. Time and place announced on Facebook NE Central USA Page or Contact Facilitator.
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In Person Support Meetings USA and Canada
Facilitator: Pam Getz 847-414-5910 [email protected]
NORTHWESTERN AREAInformation updated as of Dec 2016: For those with PD and other movement disordersLocation: Northwestern Memorial Hospital 251 East Huron, Feinberg Pavilion, 3rd Floor Room A(free parking at Huron/St. Clair)Meeting Time(s): 4th Thursday of every month from 1:00-2:00 pmFacilitator: Pamela Palmentera 312-503-4397 [email protected]
INDIANA INDIANAPOLIS
Information updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Gary Huddleston 317-501-4899 [email protected]
KOKOMOInformation updated as of Dec 2016: For MSA Patients/caregivers Contact: Renate Sharp 765-453-5351 [email protected] Chris Markiewicz 765-513-5219 [email protected] Francie Hutton 765-453-9020 [email protected]
WARSAWInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Terry Shepherd 574-267-1566 [email protected]
IOWA
WESTERN IOWA AREAInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Keryn Paul 402-813-7315 [email protected]
KENTUCKY
LOUISVILLEInformation updated as of Dec 2016: Atypical Parkinsonian Disorders (MSA, PSP, CBD) Location: Parkisnon Center, 315 Townepark Circle, Suite 100Meeting Time: 2nd Tuesday of every month 6:30pmFacilitator: Dan Heins 502-216-4563 [email protected]
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In Person Support Meetings USA and Canada
LOUISIANA
NEW ORLEANSInformation updated as of Dec 2016: Patients/families/caregivers with PSP/CBD/MSA & related diseasesLocation: Little Farms United Church of Christ, 135 Sauve Road, River Ridge, LA 70123Meeting Time(s): 3rd Thursday of each month from 7:00pm - 8:00pmFacilitator: Shiela Grose 504-737-2614 [email protected]
MAINE
FALMOUTHInformation updated as of Dec 2016: For patients/caregivers dealing with Atypical Parkinsonian Disorders like PSP, CBD, MSA, OPCA, SND, SDSLocation: Maine Parkinson’s I&R Center, 5 Bucknam Road, Falmouth, MEMeeting Time(s): One Sunday per quarter from 1:00pm - 3:00pm. Contact Facilitator for info.Facilitator: Barbi Johnson 207-633-0881 [email protected]
WELLSInformation updated as of Dec 2016: No Meeting Email Support OnlyContact: Gayle Gardner [email protected] or [email protected]
MARYLAND
BALTIMOREInformation updated as of Dec 2016: For caregivers affect by Neurodegenerative diseasesLocation: Johns Hopkins at Greenspring station, 10753 Falls Road, Pavillion II, Café ConferenceRoom, Lutherville, MD 21093 Meeting Time 1st Thursday of every month from 10:00am-12:00pmFacilitator: Becky Dunlop, RN 410-955-8795 [email protected]
BEL AIR
Information: For caregiver affected by MSA, PSP, CBD & other neurodegenerative diseasesLocation: William McFaul Activities Center 525 West McPhail Road, Bel Air, MD 21014Meeting Times: 4th Thursday of every month from 2pm-4pmFacilitator: Bailey Vernon 410-616-2811
EASTONInformation: for caregivers affected by Parkinson’s PSP, CBD, MSA and other Neuro diseasesLocation: Eastern Shore Smile Solutions 29267 Erickson Dr. Easton, MD 21601
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In Person Support Meetings USA and Canada
Meeting Time: 3rd Wednesday of every month from 3:30pm-5:00 pmFacilitator: Bailey Vernon 410-616-2811
LUTHERVILLEInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Beverly Gorman www.facebook.com/beverly.k.gorman
PRINCE FREDERICKInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: James Taylor 410-535-0780 [email protected]
MASSACHUSETTS
BOSTONInformation updated as of Dec 2016: For MSA Patients/Caregivers Location: Boston University Medical Center; 88 East Newton Street, 2nd floor, Conf Rm C, Boston, MAMeeting Time: quarterlyFacilitator: Melissa Diggin 339-927-5468 [email protected]
GARDNERInformation: For MSA patients/caregiversLocation: Heywood Hospital in Gardner, MA Meeting Time: last Wednesday of each month at 2 PM Facilitator: Marybeth Kumph 978-630-643 Carl Billington 987-632-9682
MICHIGAN
DETROIT Information updated as of Dec 2016: Non Profit for MSA Defeat MSA & The MSA Shoe29924 Jefferson AvenueSaint Clair Shores, MI 48082Email: [email protected]: 586 246-1475
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In Person Support Meetings USA and Canada
Periodic Meetings - Co-Sponsors: MSA Coalition & Defeat MSA
Location:Saint Joseph Mercy Oakland Hosp.44405 Woodward AvenuePontiac, MI 48341
Hosts:Dr Pratik Bhattacharya (Neurology, SJMO) & Philip Fortier (MSAC Board Member; Director, Defeat MSA)
ALMAInformation: For patients, caregivers, and families dealing with PSP, CBD, MSA and other atypical Parkinsonian disordersLocation: Masonic Pathways, 1200 Warwick Drive, Alma, Michigan, Diog Conference Center (below chapel)Meeting Time(s): 4th Wednesday of every month Facilitators: Robbie and Keith Virgo 989-681-6321
DELTON Information updated as of Dec 2016: For patients, caregivers and families with PSP, CBD, MSA and other atypical parkinsonian disordersLocation: 1137 Floria Drive, Delton, MI 49046 (park in church parking lot)Meeting Time(s): 2nd Saturday of each month (March thru December only) 2:00pm-3:30 pm Please contact facilitator if you plan to attendFacilitator: Mary Meagher 269-267-3117 [email protected]
MINNESOTA
MINNEAPOLISInformation: For patients and families dealing with PSP, CBD, MSALocation : Struther's Parkinson's Center 6701 Country Club Drive, Golden Valley, MN 55427Meeting Time: 2nd Wednesday of every month from 1:00pm -2:30pmFacilitator: Joan Hlas 952-993-6650
MINNEAPOLISInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Jean Wayne 612-419-2573 [email protected]
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In Person Support Meetings USA and Canada
MONTANA
KALISPELLInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Gary Cuthbertson 406-257-4392 [email protected]
NEBRASKA
OMAHAInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Keryn Paul 402-813-7315 [email protected]
LINCOLNInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Susie Luxford 402-525-7367 [email protected]
NEVADA
LAS VEGASInformation: No Meeting Phone/email Support OnlyContact: Marty Koppel 702-914-8041 please leave message if no answer
NEW JERSEY
TRI-STATE AREAInformation updated as of Dec 2016: Non profit support group covering the tri-state area MSA NJP.O. Box 773 Howell, NJ 07731 www.msanj.orgContact: Cynthia Roemer [email protected]
Meets the second Saturday of the month 11 a.m. - 1:00 p.m.Overlook Medical CenterConference Room #1 Summit, NJOther Locations Considered
Email Support AvailableClosed Facebook Support Group for MSA NJ community only: www.facebook.com/groups/MSANJSupport
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In Person Support Meetings USA and Canada
CAPE MAY Information updated as of Dec 2016: For caregiver dealing with Atypical Parkinson+ disordersLocation: Cape Regional Medical Center, 2 Stone Harbor Blvd, Cape May Court House, New Jersey (exit 10 off the Garden State Parkway, Maruchi Room (first floor of medical center)Meeting Time: 1st Tuesday of every month 1:00pm -3:00 pmFacilitator: Bonnie Kratzer 609-463-4043 [email protected]
MOORESTOWN (5 minutes from Philly and 30 from Trenton)Information updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Rachel Zambrano 856-316-6742 [email protected]
NEW MEXICO
ALBUQUERQUE Information: For patients, caregivers and families affected by PSP, CBD, MSA and Atypical PD Location: The Flying Star 10700 Corrales Road, Albuquerque, NM Meeting Time(s): 1st Wednesday of each month from 6:30pm-8:00pm until Sept. Note: Starting Sept meeting will change to the first Tuesday of each month at same time Facilitator: Roxi Padrid 312-485-9342
NEW YORK
TRI-STATE AREAInformation updated as of Dec 2016: Non profit support group covering the tri-state area MSA NJP.O. Box 773 Howell, NJ 07731 www.msanj.orgContact: Cynthia Roemer [email protected]
Meets the second Saturday of the month 11 a.m. - 1:00 p.m.Overlook Medical CenterConference Room #1 Summit, NJOther Locations Considered
Email Support AvailableClosed Facebook Support Group for MSA NJ community only: www.facebook.com/groups/MSANJSupport/
BUFFALO
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In Person Support Meetings USA and Canada
Information updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Maureen Conley 716-627-7344 [email protected]
NEW YORK CITY METRO AREAInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Kara Holisher 516-932-1696 [email protected]
BROOKLYNInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Caitlin Connelly 845-901-8411 [email protected]
SYRACUSE/CHITTENANGOInformation: For Anyone with Parkinson or SDS/MSALocation: Jim Marshall Farm Foundations Facility North Chittenango
Directions to the farm can be found at www.jmffinc.org/servicesMeeting times: 4th Tuesday of each month from 12:30PM-2:30PMContact: Wayne Hamilton 315-687-9014
SYRACUSEInformation updated as of Dec 2016: No Meeting Phone/email Support Only
Contact: Jackie VandenBerg [email protected]
NORTH CAROLINA
CHARLOTTEInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Robert Lee 704-552-9198 [email protected]
RALEIGHInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Joe Turner 919-971-3512 [email protected] Melissa Turner 919-741-9668 [email protected]
ADVANCEInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Tammy Hunt Hauser 336-998-2942 [email protected]
HIGH POINTInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Amy Nissen [email protected]
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In Person Support Meetings USA and Canada
OHIO
CLEVELANDInformation updated as of May 2017: For patients/families/friends/caregivers affected by PSP, CBD, MSALocation: Southwest General Hospital, 18697 Bagley Road, Middleburg Heights, OH, Room
15C (basement level)Meeting Time(s): 2nd Sunday of each month from 2:00pm - 4:00pmDirections/Parking: Hospital is easy accessed from I-480, I-71 and the Ohio Turnpike - free parking rear garage of hospital.Facilitator: Dave Potter 440-263-5330 [email protected] Pat Beekman 440-234-0007(Group sponsored by CurePSP)
CINCINNATIInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Kathy Griffin 513-208-6621 [email protected]
FAIRFIELDInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Brenda Reams 513-860-2912 [email protected] Paul Reams [email protected]
KETTERING Information updated as of Dec 2016: For MSA patients/caregivers Meeting Time(s): A get together is arranged in this area a couple times a year Contact: Susan Cervone 937-369-9531 [email protected]
WESTERVILLE Information: For MSA caregivers Meeting Time(s): Occasional meetings are now being held Contact: Cathy Rapenport 614-403-1440 [email protected]
OKLAHOMA
GROVEInformation: No Meeting Phone Support OnlyContact: Paul Nandico 918-786-4949
OREGON
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In Person Support Meetings USA and Canada
EUGENEInformation updated as of Dec 2016: PD+ disorders (PSP, CBD, MSA, Lewy Body) and their care partners.
Location: Parkinson's Resources of Oregon-Lane County at Eugene Mindworks Meeting: the 2nd Wednesday, 1:30-3:00 (Usually every other month) Facilitator: Gordon & Lori Robertson 541-997-2876 [email protected] Please contact Gordon & Lori about the next meeting
BENDInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Nena Close 541-419-6408(cell) [email protected]
PORTLANDInformation updated as of Dec 2016: For MSA and PSP Patients /Caregivers Location: Marquis Care Center, 319 NE Russet ST, Portland, OR Meeting Time: 3rd Saturday of each month 10 am to noon Facilitator: Pat Robertson 503-310-9085 [email protected]
PORTLANDInformation updated as of Dec 2016: For families & caregivers of people with PSP & CBD also welcomes MSA Locations: OHSU River side building Room 12181 3303 SW Bond St. Portland, OR 97239Meeting Time: 1st Thursday of each month at 5:30pm Facilitator: Hallie Bradley [email protected]
PENNSYLVANIA
TRI-STATE AREAInformation updated as of Dec 2016: Non profit support group covering the tri-state area MSA NJP.O. Box 773 Howell, NJ 07731 www.msanj.orgContact: Cynthia Roemer [email protected]
Meets the second Saturday of the month 11 a.m. - 1:00 p.m.Overlook Medical CenterConference Room #1 Summit, NJOther Locations Considered
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In Person Support Meetings USA and Canada
Email Support AvailableClosed Facebook Support Group for MSA NJ community only: www.facebook.com/groups/MSANJSupport/
N.VERSAILLESInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Carole Barber 412-678-8948 [email protected]
PHILADELPHIAInformation: For persons with movement disordersLocation: Pennsylvania Hospital Movement Disorder Center, 330 S. 9th Street, 2nd floor conference room. Philadelphia, PA 19107Meeting Time: 3th Saturday of each month from 1:00pm to 2pmFacilitator: Christin Salemno 215-829-2347
YORK Information: No Meeting Phone/email Support Only
Contact: Thomas Fitzgerald 717-840-3830
PUERTO RICO
Information updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Alexis Brewer 787- 510-4690 [email protected]
SOUTH DAKOTA
SIOUX FALLSInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Dawn Koenig 605-759-6740 [email protected]
TENNESSEE
TULLAHOMAInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Marilyn Morris 913-455-3108 [email protected]
FAIRFIELD GLADE Information: PD & Movement Brian disorder Support Group (PD,MSA, ET,PSP,CBD)
Location: Christ Luthern Church Fellowship Hall 481 Snead Dr. Fairfield Glade, TN
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In Person Support Meetings USA and Canada
Meeting Time: 1st Tuesday of each month at 2:30 pmFacilitator: Gary & Sally Dixner 931-484-0193
TEXAS
HOUSTONInformation updated as of Dec 2016: For patients/families with PSP, CBD, MSA, LBDLocation: Memorial Hermann SW Hospital, Houston, TX, Learning Center B, Professional
Building IIMeeting Time(s): 3rd Saturday of each month (except July and December) at 1:00pmFacilitator: Karen Kennemer 281-358-2282 [email protected]
DALLASInformation updated as of Dec 2016: For PSP/CBD/MSA patients and caregiversLocation: Texas Health Resources University (THRU) building, Room 111Meeting Time(s): 3rd Saturday of the month (except August) from 10:00am - 11:30amFacilitator: Kathryn MacDonell 214-908-4793 [email protected]
SEYMOURInformation updated as of Dec 2016: For patients & caregivers affected by MSA, PSP, CBD & Atypical PD+Location: Baylor Country Extension Building 500 N. Main Street Seymour TX 76380Meeting Time: 3rd Monday of each month from 4:00pm-5:30pmFacilitator: Sis Hammack 940-889-6638 [email protected]
SAN ANTONIOInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Sharon Sutton 210-296-4619 [email protected]
Candice Hernandez 210-912-4530 [email protected]
VERMONT
BURLINGTONInformation updated as of Dec 2016: For caregivers of Parkinson's with mild cognitive impairment and Parkinson's Plus syndromesLocation: Varies; contact facilitator for infoMeeting Time(s): Varies; contact facilitator for infoFacilitator: Janice Clements 802-862-7464 [email protected]
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In Person Support Meetings USA and Canada
VIRGINIA
AMISSVILLEInformation updated as of Dec 2016: Will meet with people if they want to travel to Amissville or will meet at other’s home if accessible and can arrange a time and date to have a meetingContact: Bill Werre 540-937-6092 [email protected]
VIRGINIA BEACHInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: James (Jim) Alvaro 757-430-2237 [email protected]
WASHINGTON
SPOKANEInformation updated as of May 2017: No Meeting Phone/email Support OnlyContact: Amy Mitchell 509-939-2370 [email protected]
SEATTLEInformation updated as of May 2017: For Atypical Parkinson's (includes MSA) patients and caregivers. Location: Swedish Cherry Hill Medical Center, 500 17th Ave, Seattle WAMeeting Time: 4th Monday of every monthContact: Suzanna Eller 206-320-3494 [email protected]
WEST VIRGINIA
BECKLEYInformation updated as of Dec 2016: For patients, caregivers, and families dealing with PSP, CBD, MSA and other atypical Parkinsonian disordersLocation: Offices of Dr. Rhonda Guy, 424 Stanaford Road, Beckley, West VirginiaMeeting Time(s): 3rd Saturday of every month from 1:00pm - 3:00pmFacilitator: Jean Johnson 304-573-3284 [email protected]
MARTINSBURG Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Shelli Hannon Kuhn 717-830-6199 [email protected]
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WYOMING
JOHNSTOWN/LOVELAND (COLORADO) Information: MSA, PSP, CBD Support Group
Location: Northern Colorado Rehabilitation Hospital 4401 Union Street Johnstown CO 80528Meeting Time: 2nd Friday of each month from 1:00pm - 3:00pmFacilitator: Ruth Fletcher-Carter 970-532-2681 [email protected]
~~~~~~~~~ End of USA In-Person Support Groups ~~~~~~~~
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This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
In Person Support Meetings USA and Canada
CANADA
ALL PROVINCES
Information updated as of May 2017: No Meeting Email Support OnlyContact: Pam Bower [email protected] or [email protected]
ALBERTA
EDMONTONInformation updated as of Dec 2016: No Meeting Phone/email Support Only - Contact for the northern region of Alberta Contact: Iris Kirschner 780-792-7732 [email protected]
CALGARYInformation updated as of Dec 2016: For patients, caregiver and families with PSP, CBD, MSA and other Atypical PDLocation: Servus Credit Union- Creekside Branch 12662 Symons Valley RD NW , Calgary ABMeeting time: 3rd Saturday of every month from 12:00pm -2:00pmFacilitator: Kelly Clapham 403-803-3307 [email protected]
BRITISH COLUMBIA
SURREYInformation updated as of Dec 2016: For anyone affected by PSP, CBD, MSALocation: Elim Village, Oasis Building, Meeting Room, 2nd Floor; The address will get folks there, but because the address is difficult to access using 158 Street, I advise new people to use: 'GPS' to 9045 - 160 Street, Surrey, BCVillage signage will direct them to Oasis building, and the meeting room.Meeting time: 10:00 am to 12:00 noon (We do NOT meet in December)Facilitator: Bob Brett 604-930-8150 [email protected] Robyn Heppner 604-584-7587 x2020 [email protected]
SIDNEYInformation updated as of Dec 2016: No Meeting Phone/email Support OnlyContact: Ann Jeffrey 250-656-9799 [email protected]
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In Person Support Meetings USA and Canada
NOVA SCOTIA
HALIFAXInformation updated as of May 2017: No Meeting Email Support OnlyContact: Pam Bower [email protected] or [email protected]
ONTARIO
HAMILTONNo Meeting Phone/email Support OnlyContact: Bonnie Information: Llewellyn 905-979-8254 [email protected]
BURLINGTON Information updated as of December 2016: For patients, caregivers, and families dealing with PSP/CBD/MSA and other atypical Parkinsonian disordersLocation: Appleby Place Retirement Residence, 500 Appleby Line, Burlington, ONMeeting Time(s): Last Monday of the month from 1pm-3pm Facilitator: Kimberley Adrovez [email protected]
KINGSTONInformation updated as of Dec 2016: For patients and families affected by PSP, CBD and MSALocation: Legion 560 (Fireside Room), 734 Montreal Street, Kingston, ON (free parking and handicap accessible)Meeting Time(s): 1st Thursday of every month from 6:00pm - 8:00pm Facilitator: MJ Overby 613-531-2685 [email protected]
TORONTOInformation updated as of Dec 2016: For care partners of PSP/CBD/MSA patients; hosted by Parkinson CanadaLocation: 4211 Yonge Street, Suite 305, Toronto, ONMeeting Time(s): 3rd Wednesday of every month from 6:00pm – 8:00pmFacilitator: Robert TerSteege 416-227-3372/ 1-800-565-3000 x3372 [email protected]
~~~~~~~~~ End of Canada In-Person Support Groups ~~~~~~~~
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This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
In Person Support Meetings USA and Canada
MSA COALITION MODERATED FACEBOOK GROUPS
Moderator: MSA CoalitionStaff www.facebook.com/MSACoalitionStaff
PUBLIC DISCUSSION GROUP (5000+ members): www.facebook.com/groups/MSACoalitionPublicGroup/
USA REGIONAL FACEBOOK SUPPORT GROUPS (Private discussion groups):
EAST COAST
MSA Coalition - New England (ME-NH-VT-CT-RI-MA)www.facebook.com/groups/MSANewEngland/
MSA Coalition - Middle Atlantic (NY-NJ-PA)www.facebook.com/groups/MSAMidAtl/
MSA Coalition - South Atlantic (DE-DC-FL-GA-MD-NC-SC-VA-WV)www.facebook.com/groups/MSASOATL/
CENTRAL STATES
MSA Coalition - Northeast Central (IN-IL-MI-WI-OH)www.facebook.com/groups/MSANECentralUS/
MSA Coalition - Northwest Central (IA-KS-MN-MO-ND-SD-NE)www.facebook.com/groups/MSANWCentralUS/
MSA Coalition - Southeast Central (AL-KY-MS-TN)www.facebook.com/groups/MSASECentralUS/
MSA Coalition - Southwest Central (TX-OK-LA-AR)www.facebook.com/groups/MSASWCentral/
WESTERN STATES
MSA Coalition - Mountain States (AZ-CO-ID-NM-MT-UT-NV-WY)www.facebook.com/groups/MSAMountainUS/
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In Person Support Meetings USA and Canada
MSA Coalition - Pacific States (CA-OR-WA-HI-AK)www.facebook.com/groups/MSAPacificUS/
OTHER ONLINE SUPPORT GROUPS
MSA Canadawww.facebook.com/groups/MSACanada/
Multiple System Atrophy (MSA)www.facebook.com/groups/48942097968/
Multiple System Atrophy (MSA) Buddieswww.facebook.com/groups/MSABuddies/
MSA: A Caregiver’s Journey – Caregivers onlywww.facebook.com/groups/168770156602557(Private group - you must request an invitation to join - contact moderator)Moderator: Kym Thompson [email protected]/omgkymModerator: Susan Cervone [email protected]/frankunsusan
MSA: A Patient’s Journey – Patients only www.facebook.com/groups/MSAPatients(Private group - you must request an invitation to join - contact moderator)Moderator: Vera James [email protected]/vera.jamesModerator: Pam Bower [email protected]/pam.bower
YAHOO SUPPORT GROUPS
Shydrager Online Support Group for MSA (2000 members, worldwide)Founded in 1995 by Vanderbilt University Autonomic Dysfunction Center staff and currently hosted at http://groups.yahoo.com/group/shydrager
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This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
In Person Support Meetings USA and Canada
WEBINARS
Online Discussion webinar - For MSA Care Partners
When: 1st Monday of each month
Time: 8:00 pm - 9:00 pm EST
Register: https://www2.gotomeeting.com/register/977578139
Online Discussion webinar - For MSA Patients
When: 3rd Monday of each month
Time: 8:00 pm - 9:00 pm EST
Register: https://www2.gotomeeting.com/register/759482131
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This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
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