in person support meetings usa and canada · 1/23/2019 · contact: carol dutcher 925-998-3656...

In Person Support Meetings

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This list is maintained by Pam Bower [email protected] Updated: January 23, 2019

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

"improving quality of life and building hope for people affected by

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.


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MSA COALITION BOARD OF DIRECTORS Chair Cynthia Roemer Howell NJ 866-737-4999 x207 [email protected] Vice Chair Don Crouse Charlotte NC 866-737-4999 x203 [email protected] Treasurer Carol Langer Boston MA 866-737-4999 x205 [email protected] Secretary Pam Bower Halifax NS

CANADA 866-737-4999 x204 [email protected]

Patient Representative

Hadley Ferguson Missoula MT [email protected]

Outgoing Caregiver Rep

Diane Adkins Stephens City VA

866-737-4999 x214 [email protected]

Incoming Caregiver Rep

Elaine Douglas Seattle WA [email protected]

Steve Klisares Dunlap IL 866-737-4999 x211 [email protected] Larry Kellerman Washington IL 866-737-4999 x209 [email protected] Neil Versel Chicago IL 866-737-4999 x210 [email protected] Allyson Mayeux Marshfield WI 866-737-4999 x215 [email protected] Scientific Liaison

Vik Khurana Boston MA [email protected]

Medical Liaison

Daniel Claassen Nashville TN [email protected]

Past Chair (Emeritus)

Judy Biedenharn Grove City OH 866-737-4999 x201 [email protected]

Past Chair (Emeritus)

Vera James Walnut CA [email protected]

Founder, Medical Advisor (Emeritus)

David Robertson Nashville TN [email protected]

Medical Advisor (Emeritus)

Thomas Chelimsky Milwaukee WI [email protected]

SCIENTIFIC/MEDICAL ADVISORY BOARD

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] Wassilios Meissner, M.D.,Ph.D. Bordeaux France [email protected] Anthony Lang, M.D. Toronto Canada [email protected] Glenda Halliday, Ph.D. Sydney Australia [email protected] Outgoing SAB Chair (Emeritus)

David Robertson, M.D. Nashville TN [email protected]


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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


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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]

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]


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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 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]


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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 Meeting Time(s): 2nd Saturday of each month from 2:00pm - 3:30pm


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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 Jan 2019: No Meeting Phone/email Support Only Contact: Tiffany Christensen 208-389-8022 [email protected]

ILLINOIS


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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) 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]


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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]

BALTIMORE

Information updated as of Jan 2019: Annual Symposium for MSA & PSP: Stephen K. Myers Memorial Symposium Date: Usually held in October Location: Marriot Camden Yards in Baltimore Meeting Format: Usually a keynote speaker presents on medical aspects of MSA & PSP. Panel discussion and reception follow. Speakers may also present from the patient and care-partner perspective. Representatives from the MSA Coalition and CurePSP usually attend. Contact: Emily Greene 410-706-5269 [email protected]


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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 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


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Information updated as of Dec 2016: Non Profit for MSA 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

Location: Saint Joseph Mercy Oakland Hosp. 44405 Woodward Avenue Pontiac, MI 48341

Hosts: Dr Pratik Bhattacharya (Neurology, SJMO) & Philip Fortier (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 Location : Struther's Parkinson's Center 6701 Country Club Drive, Golden Valley, MN 55427


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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 Jan 2019:

MSA NJ (Non profit support group covering the tri-state area) P.O. Box 773 Howell, NJ 07731 www.msanj.org Contact: Cynthia Roemer [email protected] Phone MSA NJ: 732-903-8517

Monthly Meetings


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Meets the second Saturday of the month 11 a.m. - 1:00 p.m. Overlook Medical Center Conference Room #3 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

NEW YORK CITY & TRI-STATE AREA

Information updated as of Jan 2019:

MSA NJ (Non profit support group covering the tri-state area) P.O. Box 773 Howell, NJ 07731 www.msanj.org Contact: Cynthia Roemer [email protected] Phone MSA NJ: 732-903-8517

Quarterly Meetings Planned


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Next meeting: February 23, 2019 11 a.m. - 1:00 p.m. Location: NYU Langone Health, 530 First Ave, New York Facilitator: Kara Byron 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] ADVANCE Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Tammy Hunt Hauser 336-998-2942 [email protected]


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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 Information: No Meeting Phone Support Only Contact: Paul Nandico 918-786-4949

OREGON


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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 Jan 2019: MSA NJ (Non profit support group covering the tri-state area) P.O. Box 773 Howell, NJ 07731 www.msanj.org Contact: Cynthia Roemer [email protected] Phone MSA NJ: 732-903-8517

Monthly Meetings Meets the second Saturday of the month 11 a.m. - 1:00 p.m. Overlook Medical Center Conference Room #3 Summit, NJ Other Locations Considered


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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

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 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


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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] DALLAS/FT.WORTH Information updated as of Jan 2019: NeuroBrain Support Group for North Texas patients and caregivers Location: Lower level Perot Building Meadows Classrooms B&C Meeting Time(s): 3rd Saturday of the month from 10:30am - 11:30am Facilitator: Ileen McFarland Contact: Catrina Nieser T 214.345.7981 | C 801.696.7881 [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 Meeting Time(s): Varies; contact facilitator for info Facilitator: Janice Clements 802-862-7464 [email protected]

VIRGINIA


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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]

MARTINSBURG Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Shelli Hannon Kuhn 717-830-6199 [email protected]

WISCONSIN

SPARTA


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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 ~~~~~~~~


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CANADA

ALL PROVINCES

Information updated as of Jan 2019: 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]

NOVA SCOTIA


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HALIFAX Information updated as of Jan 2019: No Meeting Email Support Only Contact: Pam Bower [email protected] or [email protected]

ONTARIO

HAMILTON Information updated as of Jan 2019: No Meeting Phone/email Support Only Contact: Bonnie Llewellyn 905-979-8254 [email protected]

BURLINGTON Information updated as of Dec 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 ~~~~~~~~


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ONLINE SUPPORT GROUPS

MSA COALITION MODERATED FACEBOOK GROUPS PUBLIC DISCUSSION GROUPS (Facebook account required):

5000+ members, worldwide: MSA Coalition Public Discussion Group on MSA www.facebook.com/groups/MSACoalitionPublicGroup/

2000+ members, worldwide: Multiple System Atrophy Research News www.facebook.com/groups/MSANewsGroup/

PRIVATE DISCUSSION GROUPS (Facebook account required):

3000+ members, worldwide: Multiple System Atrophy (MSA) Buddies www.facebook.com/groups/MSABuddies/

PRIVATE WEB-BASED SUPPORT GROUPS (Join via email or web, no facebook account required):

2000+ members, worldwide: Shydrager Yahoo Online Support Group for MSA Founded in 1995 by Vanderbilt University Autonomic Dysfunction Center staff http://groups.yahoo.com/group/shydrager Email moderator: [email protected]

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/


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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/

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/

MSA: A Patient’s Journey – Patients only www.facebook.com/groups/MSAPatients

(Ultra 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

MSA: A Caregiver’s Journey – Caregivers only www.facebook.com/groups/168770156602557

(Ultra Private group - you must request an invitation to join - contact moderator) Moderator: Kym Thompson [email protected] www.facebook.com/omgkym


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Moderator: Susan Cervone [email protected] www.facebook.com/frankunsusan

ONLINE SUPPORT WEBINARS (Sponsored by CurePSP)

Online Discussion webinar - For MSA Care Partners:

Carepartners of People with MSA

Meeting Time: 1st Monday of each month from 8:00pm – 9:00pm Eastern

Meeting Link: https://www2.gotomeeting.com/register/977578139

Meeting Tel: (415) 655-0060; Access Code: 950-759-636

Facilitator: Tom Tait, [email protected], 856-725-3450

Online Discussion webinar - For MSA Patients:

People with MSA

Meeting Time: 3rd Monday of each month at 8:00pm Eastern

Meeting Link: https://attendee.gotowebinar.com/register/8182973838726361090

Meeting Tel: (914) 614-3221; Access Code: 500-058-061

Facilitator: Cathy Chapman, Phone 307-332-4144, email [email protected]

in person support meetings usa and canada · 1/23/2019 · contact: carol dutcher 925-998-3656...

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