InPersonSupportMeetings
USAandCanada
Page 1 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
THE MULTIPLE SYSTEM ATROPHY (MSA) COALITION, INC.
9935-D Rea Road #212, Charlotte, NC 28277 USA www.MultipleSystemAtrophy.org
Toll free: 1-866-737-4999 or 1-866-737-5999 Contact Us or Find us on Facebook
DONATE NOW
“United to Defeat Multiple System 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
SUPPORT The Multiple System Atrophy Coalition offers a toll free support line staffed by former MSA caregivers. Contact: Larry Kellerman Toll free US and Canada: 866-737-5999 [email protected] Please Visit our MSA Resources Page
EDUCATION The MSA Coalition hosts an annual conference for MSA patients and families (usually Sep or Oct) 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 Us Download: “MSA - What you Need to Know”
RESEARCH The Multiple System Atrophy Coalition is the leading nonprofit funder of global MSA research. Since 2013 we have funded over $1.7 million in research projects. Find out more here. Patients please register in the Global MSA Registry
ADVOCACY & AWARENESS The 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.
BOARD OF DIRECTORS
InPersonSupportMeetings
USAandCanada
Page 2 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
Chair Cynthia Roemer Howell NJ 866-737-4999
x207 [email protected]
Vice Chair Don Crouse Charlotte NC 866-737-4999 x203
Treasurer Carol Langer Boston MA 866-737-4999 x205
Secretary Pam Bower Halifax NS CANADA 866-737-4999 x204
Patient Representative
Hadley Ferguson Missoula MT [email protected]
Caregiver Representative
Diane Adkins Stephens City VA 866-737-4999 x214
Larry Kellerman Washington IL 866-737-4999 x209
Steve Klisares Dunlap IL 866-737-4999 x211
Neil Versel Chicago IL 866-737-4999 x210
Allyson Mayeux Marshfield WI
Scientific Liaison
Vik Khurana Boston MA [email protected]
Chair Emeritus Judy Biedenharn Grove City OH 866-737-4999 x201
SCIENTIFIC ADVISORY BOARD
Chair David Robertson, M.D. Nashville TN [email protected] Thomas Chelimsky, M.D. Milwaukee WI [email protected] Phillip Low, M.D. Rochester MN [email protected] Steven Vernino, M.D., Ph.D. Dallas TX [email protected] Gregor K. Wenning, M.D., Ph.D. Innsbruck Austria [email protected]
InPersonSupportMeetings
USAandCanada
Page 3 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
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
CHICKASAW Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Janiece Naber Martindale 251-300-1196 [email protected]
ARKANSAS LITTLE ROCK Information updated as of Dec 2016: For anyone affected by PSP, CBD or MSA Location: Alzheimer’s Arkansas 201 Markham Center Drive, Little Rock, AR 72205 (ask front desk for room details, 501-224-0021 Meeting Time: 4th Thursday of every months from 1:00pm-2:30pm Facilitator: Randi Haley 870-703-6417 [email protected]
ARIZONA
GILBERT Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: 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 Contact: Candy Welsh 650-218-5858 [email protected]
InPersonSupportMeetings
USAandCanada
Page 4 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
FOUNTAIN VALLEY
Information updated as of Dec 2016: For family members and caregivers dealing with Atypical PD+ Disorders Location: Orange coast Memorial Medical Center, Classroom C, 9920 Talbert Ave, Fountain Valley, CA 92708 Facilitator: Justin Aquines 714-907-0074 [email protected] FREMONT Non-profit for MSA Cure MSA – Kathy Shih Memorial Foundation P.O. Box 15088 Fremont, CA 94539 USA www.curemsa.org
Contact: Lily Shih (Executive Director) 510-226-0453 [email protected] FREMONT Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Sandy Bierman 510-656-6897 [email protected] Lily Shih 510-226-0453 [email protected] GOLETA Information updated as of Dec 2016: No Meeting Phone/email Support Only after 11am EST Contact: George Relles 805-683-4829 [email protected]
IRVINE
Information 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 92604 Meeting Time: Every Tuesday 10:30am -12:00pm Location: Lakeview Senior Center, 20 Lake Road, Irvine, CA 92604 Facilitator: Don Perdue 949-552-0465 [email protected]
LIVERMORE Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Carol Dutcher 925-998-3656 [email protected]
LOS ANGELES Information updated as of Dec 2016: The Los Angeles Parkinsonian Disorders Support for people with PSP, CBD, MSA, and PD and their family members & friends
InPersonSupportMeetings
USAandCanada
Page 5 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
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] To RSVP and for Further Information contact Dolly West [email protected] or phone: 310-206-2154.
MODESTO
Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Janeice Partridge [email protected] NORTHERN/SAN MATEO Information 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 94404 Meeting Time(s): Every six weeks (call or e-mail for schedule) from 5:00pm - 7:00pm Facilitator: 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, 7th 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 DIEGO
Information updated as of Dec 2016: For patients/caregivers dealing with Atypical Parkinsonian Disorders like MSA, PSP, CBD, OPCA, SND, SDS
Location: University of California San Diego (UCSD), East Campus, Medical Center Modular 1 (MCM1) Room 140 (conference room) 9423 Health Sciences Dr, La Jolla, CA 92037 Meeting Time(s): Third Monday of each month at 1 pm Facilitator: Darlene Gerow 619-806-9649 [email protected]
SAN DIEGO Information 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]
InPersonSupportMeetings
USAandCanada
Page 6 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
SANTA BARBARA Information updated as of Dec 2016: No Meeting Phone/email Support Only
Contact: Suzanne Grimmesey 805-455-5194 [email protected] COLORADO
DENVER/ENGLEWOOD Information 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/LOVELAND Information: MSA, PSP, CBD Support Group Location: Northern Colorado Rehabilitation Hospital 4401 Union Street Johnstown CO 80528 Meeting Time: 2nd Friday of each month from 1:00pm - 3:00pm Facilitator: Ruth Fletcher-Carter 970-532-2681 [email protected]
FLORIDA
JACKSONVILLE Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Shirley Snyder 904-207-5501 [email protected]
SOUTHEAST/DEERFIELD BEACH
Information updated as of Dec 2016: For patients/caregivers/families affected by MSA, PSP, CBD and related diseases Location: 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 info Facilitator: Paul Freeman 305-970-0805 [email protected] SOUTHWEST/NAPLES Information updated as of Dec 2016: For patients/caregivers/families affected by MSA, PSP, CBD and related diseases Location: Manor Care at Lely Palms, 6135 Rattlesnake Hammock Road, Naples, FL 34113
InPersonSupportMeetings
USAandCanada
Page 7 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
Meeting Time(s): 2nd Saturday of each month from 2:00pm - 3:30pm Facilitator: Cindy MacDonald 239-353-3960/239-404-4429 [email protected] NAPLES Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Tenley Smith 630-337-1314 [email protected]
GEORGIA
ATLANTA Information updated as of Dec 2016: For care partners only of those living with Atypical Parkinsonism’s, PSP, CBD Location: Emory Brain Health Center. 12 Executive Park Dr. Room 331 C Atlanta, GA Meeting Time(s): 2nd Saturday of each month from 10:00am – 11:30am Facilitator: Lynn Ross 404-712-7091 [email protected]
ATLANTA Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Kathy Hansen 678-371-5139 [email protected]
ELLIJAY Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Paula Davis 706-669-1978 [email protected]
SMYRNA Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: 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] IDAHO
BOISE Information updated as of Apr 2018: No Meeting Phone/email Support Only Contact: Tiffany Christensen 208-389-8022 [email protected]
InPersonSupportMeetings
USAandCanada
Page 8 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
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. Facilitator: Pam Getz 847-414-5910 [email protected]
NORTHWESTERN AREA Information updated as of Dec 2016: For those with PD and other movement disorders Location: 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 pm Facilitator: Pamela Palmentera 312-503-4397 [email protected]
INDIANA INDIANAPOLIS
Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Gary Huddleston 317-501-4899 [email protected] KOKOMO Information 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]
WARSAW Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Terry Shepherd 574-267-1566 [email protected]
IOWA
WESTERN IOWA AREA Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Keryn Paul 402-813-7315 [email protected]
KENTUCKY
LOUISVILLE Information updated as of Dec 2016: Atypical Parkinsonian Disorders (MSA, PSP, CBD)
InPersonSupportMeetings
USAandCanada
Page 9 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
Location: Parkisnon Center, 315 Townepark Circle, Suite 100 Meeting Time: 1st Tuesday of every month 3:00pm – 4:30pm Facilitator: Dan Heins 502-216-4563 [email protected]
LOUISIANA
NEW ORLEANS Information updated as of Dec 2016: Patients/families/caregivers with PSP/CBD/MSA & related diseases Location: Little Farms United Church of Christ, 135 Sauve Road, River Ridge, LA 70123 Meeting Time(s): 3rd Thursday of each month from 7:00pm - 8:00pm Facilitator: Shiela Grose 504-737-2614 [email protected]
MAINE
FALMOUTH Information updated as of Dec 2016: For patients/caregivers dealing with Atypical Parkinsonian Disorders like PSP, CBD, MSA, OPCA, SND, SDS Location: Maine Parkinson’s I&R Center, 5 Bucknam Road, Falmouth, ME Meeting Time(s): One Sunday per quarter from 1:00pm - 3:00pm. Contact Facilitator for info. Facilitator: Barbi Johnson 207-633-0881 [email protected] WELLS Information updated as of Dec 2016: No Meeting Email Support Only Contact: Gayle Gardner [email protected] or [email protected]
MARYLAND BALTIMORE
Information updated as of Dec 2016: For caregivers affect by Neurodegenerative diseases Location: Johns Hopkins at Greenspring station, 10753 Falls Road, Pavillion II, Café Conference Room, Lutherville, MD 21093 Meeting Time 1st Thursday of every month from 10:00am-12:00pm Facilitator: Becky Dunlop, RN 410-955-8795 [email protected]
BEL AIR
Information: For caregiver affected by MSA, PSP, CBD & other neurodegenerative diseases Location: William McFaul Activities Center 525 West McPhail Road, Bel Air, MD 21014
InPersonSupportMeetings
USAandCanada
Page 10 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
Meeting Times: 4th Thursday of every month from 2pm-4pm Facilitator: Bailey Vernon 410-616-2811 EASTON Information: for caregivers affected by Parkinson’s PSP, CBD, MSA and other Neuro diseases Location: Eastern Shore Smile Solutions 29267 Erickson Dr. Easton, MD 21601 Meeting Time: 3rd Wednesday of every month from 3:30pm-5:00 pm Facilitator: Bailey Vernon 410-616-2811
LUTHERVILLE
Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Beverly Gorman www.facebook.com/beverly.k.gorman
PRINCE FREDERICK
Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: James Taylor 410-535-0780 [email protected]
MASSACHUSETTS BOSTON
Information updated as of Dec 2016: For MSA Patients/Caregivers Location: Boston University Medical Center; 88 East Newton Street, 2nd floor, Conf Rm C, Boston, MA Meeting Time: quarterly Facilitator: Melissa Diggin 339-927-5468 [email protected]
GARDNER Information: For MSA patients/caregivers Location: 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
InPersonSupportMeetings
USAandCanada
Page 11 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
Defeat MSA & The MSA Shoe 29924 Jefferson Avenue Saint Clair Shores, MI 48082 Email: [email protected] www.DefeatMSA.org Tel: 586 246-1475
Periodic Meetings - Co-Sponsors: MSA Coalition & Defeat MSA
Location: Saint Joseph Mercy Oakland Hosp. 44405 Woodward Avenue Pontiac, MI 48341
Hosts: Dr Pratik Bhattacharya (Neurology, SJMO) & Philip Fortier (MSAC Board Member; Director, Defeat MSA)
ALMA Information: For patients, caregivers, and families dealing with PSP, CBD, MSA and other atypical Parkinsonian disorders Location: 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 disorders Location: 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 attend Facilitator: Mary Meagher 269-267-3117 [email protected]
MINNESOTA
MINNEAPOLIS Information: For patients and families dealing with PSP, CBD, MSA
InPersonSupportMeetings
USAandCanada
Page 12 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
Location : Struther's Parkinson's Center 6701 Country Club Drive, Golden Valley, MN 55427 Meeting Time: 2nd Wednesday of every month from 1:00pm -2:30pm Facilitator: Joan Hlas 952-993-6650 MINNEAPOLIS Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Jean Wayne 612-419-2573 [email protected]
MONTANA
KALISPELL Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Gary Cuthbertson 406-257-4392 [email protected]
NEBRASKA
OMAHA Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Keryn Paul 402-813-7315 [email protected]
LINCOLN Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Susie Luxford 402-525-7367 [email protected]
NEVADA
LAS VEGAS Information: No Meeting Phone/email Support Only Contact: Marty Koppel 702-914-8041 please leave message if no answer
NEW JERSEY
TRI-STATE AREA Information updated as of Dec 2016: Non profit support group covering the tri-state area MSA NJ P.O. Box 773 Howell, NJ 07731 www.msanj.org Contact: Cynthia Roemer [email protected]
Meets the second Saturday of the month 11 a.m. - 1:00 p.m. Overlook Medical Center
InPersonSupportMeetings
USAandCanada
Page 13 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
Conference Room #1 Summit, NJ Other Locations Considered
Email Support Available Closed Facebook Support Group for MSA NJ community only: www.facebook.com/groups/MSANJSupport
CAPE MAY Information updated as of Dec 2016: For caregiver dealing with Atypical Parkinson+ disorders Location: 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 pm Facilitator: 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 Only Contact: 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 AREA Information updated as of Dec 2016: Non profit support group covering the tri-state area MSA NJ P.O. Box 773 Howell, NJ 07731 www.msanj.org Contact: Cynthia Roemer [email protected]
Meets the second Saturday of the month 11 a.m. - 1:00 p.m. Overlook Medical Center Conference Room #1 Summit, NJ
InPersonSupportMeetings
USAandCanada
Page 14 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
Other Locations Considered
Email Support Available Closed Facebook Support Group for MSA NJ community only: www.facebook.com/groups/MSANJSupport/
BUFFALO Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Maureen Conley 716-627-7344 [email protected] NEW YORK CITY METRO AREA Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Kara Holisher 516-932-1696 [email protected] BROOKLYN Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Caitlin Connelly 845-901-8411 [email protected]
SYRACUSE/CHITTENANGO Information: For Anyone with Parkinson or SDS/MSA Location: Jim Marshall Farm Foundations Facility North Chittenango Directions to the farm can be found at www.jmffinc.org/services Meeting times: 4th Tuesday of each month from 12:30PM-2:30PM Contact: Wayne Hamilton 315-687-9014
SYRACUSE Information updated as of Dec 2016: No Meeting Phone/email Support Only
Contact: Jackie VandenBerg [email protected] NORTH CAROLINA
CHARLOTTE Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Robert Lee 704-552-9198 [email protected] RALEIGH Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Joe Turner 919-971-3512 [email protected] Melissa Turner 919-741-9668 [email protected]
InPersonSupportMeetings
USAandCanada
Page 15 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
ADVANCE Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Tammy Hunt Hauser 336-998-2942 [email protected] HIGH POINT Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Amy Nissen [email protected]
OHIO
CLEVELAND Information updated as of May 2017: For patients/families/friends/caregivers affected by PSP, CBD, MSA Location: Southwest General Hospital, 18697 Bagley Road, Middleburg Heights, OH, Room
15C (basement level) Meeting Time(s): 2nd Sunday of each month from 2:00pm - 4:00pm Directions/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)
FAIRFIELD Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: 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
GROVE
InPersonSupportMeetings
USAandCanada
Page 16 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
Information: No Meeting Phone Support Only Contact: Paul Nandico 918-786-4949
OREGON EUGENE
Information 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) Contact facilitator: 800-426-6806
BEND Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Nena Close 541-419-6408(cell) [email protected]
PORTLAND Information 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]
PORTLAND Information 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 97239 Meeting Time: 1st Thursday of each month at 5:30pm Facilitator: Hallie Bradley [email protected]
PENNSYLVANIA
TRI-STATE AREA Information updated as of Dec 2016: Non profit support group covering the tri-state area MSA NJ P.O. Box 773 Howell, NJ 07731 www.msanj.org Contact: Cynthia Roemer [email protected]
InPersonSupportMeetings
USAandCanada
Page 17 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
Meets the second Saturday of the month 11 a.m. - 1:00 p.m. Overlook Medical Center Conference Room #1 Summit, NJ Other Locations Considered
Email Support Available Closed Facebook Support Group for MSA NJ community only: www.facebook.com/groups/MSANJSupport/
N.VERSAILLES Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Carole Barber 412-678-8948 [email protected] PHILADELPHIA Information: For persons with movement disorders Location: Pennsylvania Hospital Movement Disorder Center, 330 S. 9th Street, 2nd floor conference room. Philadelphia, PA 19107 Meeting Time: 3th Saturday of each month from 1:00pm to 2pm Facilitator: 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 Only Contact: Alexis Brewer 787- 510-4690 [email protected]
SOUTH DAKOTA
SIOUX FALLS Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Dawn Koenig 605-759-6740 [email protected]
TENNESSEE
TULLAHOMA Information updated as of Dec 2016: No Meeting Phone/email Support Only
InPersonSupportMeetings
USAandCanada
Page 18 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
Contact: 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 Meeting Time: 1st Tuesday of each month at 2:30 pm Facilitator: Gary & Sally Dixner 931-484-0193
TEXAS
HOUSTON Information updated as of Dec 2016: For patients/families with PSP, CBD, MSA, LBD Location: Memorial Hermann SW Hospital, Houston, TX, Learning Center B, Professional
Building II Meeting Time(s): 3rd Saturday of each month (except July and December) at 1:00pm Facilitator: Karen Kennemer 281-358-2282 [email protected]
DALLAS Information updated as of Dec 2016: For PSP/CBD/MSA patients and caregivers Location: Texas Health Resources University (THRU) building, Room 111 Meeting Time(s): 3rd Saturday of the month (except August) from 10:00am - 11:30am Facilitator: Kathryn MacDonell 214-908-4793 [email protected] SEYMOUR Information 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 76380 Meeting Time: 3rd Monday of each month from 4:00pm-5:30pm Facilitator: Sis Hammack 940-889-6638 [email protected]
SAN ANTONIO Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Sharon Sutton 210-296-4619 [email protected] Candice Hernandez 210-912-4530 [email protected]
VERMONT
BURLINGTON Information updated as of Dec 2016: For caregivers of Parkinson's with mild cognitive impairment and Parkinson's Plus syndromes Location: Varies; contact facilitator for info
InPersonSupportMeetings
USAandCanada
Page 19 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
Meeting Time(s): Varies; contact facilitator for info Facilitator: Janice Clements 802-862-7464 [email protected]
VIRGINIA
AMISSVILLE Information 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 meeting Contact: Bill Werre 540-937-6092 [email protected] VIRGINIA BEACH Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: James (Jim) Alvaro 757-430-2237 [email protected]
WASHINGTON
SPOKANE Information updated as of May 2017: No Meeting Phone/email Support Only Contact: Amy Mitchell 509-939-2370 [email protected]
SEATTLE Information updated as of May 2017: For Atypical Parkinson's (includes MSA) patients and caregivers. Location: Swedish Cherry Hill Medical Center, 500 17th Ave, Seattle WA Meeting Time: 4th Monday of every month Contact: Suzanna Eller 206-320-3494 [email protected]
WEST VIRGINIA
BECKLEY Information updated as of Dec 2016: For patients, caregivers, and families dealing with PSP, CBD, MSA and other atypical Parkinsonian disorders Location: Offices of Dr. Rhonda Guy, 424 Stanaford Road, Beckley, West Virginia Meeting Time(s): 3rd Saturday of every month from 1:00pm - 3:00pm Facilitator: Jean Johnson 304-573-3284 [email protected]
InPersonSupportMeetings
USAandCanada
Page 20 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
MARTINSBURG Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Shelli Hannon Kuhn 717-830-6199 [email protected]
WISCONSIN
SPARTA Information updated as of Apr 2018: No Meeting Phone/email Support Only Contact: Kathy Griffin 513-208-6621 [email protected]
WYOMING
JOHNSTOWN/LOVELAND (COLORADO) Information: MSA, PSP, CBD Support Group
Location: Northern Colorado Rehabilitation Hospital 4401 Union Street Johnstown CO 80528 Meeting Time: 2nd Friday of each month from 1:00pm - 3:00pm Facilitator: Ruth Fletcher-Carter 970-532-2681 [email protected]
LANDER Information updated as of Apr 2018: No Meeting Phone/email Support Only Contact: Cathy Chapman 307-332-4144 [email protected]
~~~~~~~~~ End of USA In-Person Support Groups ~~~~~~~~
InPersonSupportMeetings
USAandCanada
Page 21 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
CANADA
ALL PROVINCES
Information updated as of May 2017: No Meeting Email Support Only Contact: Pam Bower [email protected] or [email protected]
ALBERTA
EDMONTON Information 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] CALGARY Information updated as of Dec 2016: For patients, caregiver and families with PSP, CBD, MSA and other Atypical PD Location: Servus Credit Union- Creekside Branch 12662 Symons Valley RD NW , Calgary AB Meeting time: 3rd Saturday of every month from 12:00pm -2:00pm Facilitator: Kelly Clapham 403-803-3307 [email protected]
BRITISH COLUMBIA
SURREY Information updated as of Dec 2016: For anyone affected by PSP, CBD, MSA Location: 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, BC Village 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] SIDNEY Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Ann Jeffrey 250-656-9799 [email protected]
InPersonSupportMeetings
USAandCanada
Page 22 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
NOVA SCOTIA
HALIFAX Information updated as of May 2017: No Meeting Email Support Only Contact: Pam Bower [email protected] or [email protected]
ONTARIO
HAMILTON No Meeting Phone/email Support Only Contact: 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 disorders Location: Appleby Place Retirement Residence, 500 Appleby Line, Burlington, ON Meeting Time(s): Last Monday of the month from 1pm-3pm Facilitator: Kimberley Adrovez [email protected]
KINGSTON Information updated as of Dec 2016: For patients and families affected by PSP, CBD and MSA Location: 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]
TORONTO Information updated as of Dec 2016: For care partners of PSP/CBD/MSA patients; hosted by Parkinson Canada Location: 4211 Yonge Street, Suite 305, Toronto, ON Meeting Time(s): 3rd Wednesday of every month from 6:00pm – 8:00pm Facilitator: Robert TerSteege 416-227-3372/ 1-800-565-3000 x3372 [email protected]
~~~~~~~~~ End of Canada In-Person Support Groups ~~~~~~~~
InPersonSupportMeetings
USAandCanada
Page 23 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
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/
InPersonSupportMeetings
USAandCanada
Page 24 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
MSA Coalition - Pacific States (CA-OR-WA-HI-AK) www.facebook.com/groups/MSAPacificUS/
OTHER ONLINE SUPPORT GROUPS
MSA Canada www.facebook.com/groups/MSACanada/
Multiple System Atrophy (MSA) www.facebook.com/groups/48942097968/
Multiple System Atrophy (MSA) Buddies www.facebook.com/groups/MSABuddies/
MSA: A Caregiver’s Journey – Caregivers only www.facebook.com/groups/168770156602557 (Private group - you must request an invitation to join - contact moderator) Moderator: Kym Thompson [email protected] www.facebook.com/omgkym Moderator: Susan Cervone [email protected] www.facebook.com/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] www.facebook.com/vera.james Moderator: Pam Bower [email protected] www.facebook.com/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
InPersonSupportMeetings
USAandCanada
Page 25 of 25
This list is maintained by Pam Bower [email protected] Updated: May 22, 2017
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
Top Related