List of Support Meetings & phone/ support USA and Canada

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1 USA ALL STATES THE MULTIPLE SYSTEM ATROPHY (MSA) COALITION (formerly the Shy-Drager/MSA Support Group) 8311 Brier Creek Parkway, Suite Raleigh, NC USA Toll free: or United to Defeat MULTIPLE SYTEM ATROPHY The Multiple System Atrophy (MSA) Coalition TM is a 501(c)3 charitable organization (EIN: ) devoted to a four pillar mission: Supporting patients and caregivers affected by multiple system atrophy Educating patients, caregivers and healthcare professionals Financing and encouraging meaningful research toward identifying a cause and finding a cure for MSA Advocating for issues important to the MSA community, including creating greater awareness Information: We offer two toll free support lines staffed by former MSA caregivers. Contact: Vera James (CA USA) Judy Biedenharn RN (OH USA) Meeting Time(s): We host an annual conference for MSA patients and families in a different US city each year, usually September or October timeframe. Please watch for announcements on our website DVD s of past conferences are available to order Other contacts: Carol Langer (MA USA) Don Crouse (NC USA) Pam Bower (NS CANADA) Larry Kellerman (IA USA) Phil Fortier (MI USA) Tom Looney (NC USA) Cynthia Roemer (NJ USA) Sharon Sutton (TX USA) Page 1 of 22

2 Note: 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. ALABAMA CHICKASAW Contact: Janiece Naber Martindale ARKANSAS LITTLE ROCK Information: For anyone affected by PSP<CBD or MSA Location: Alzheimer s Arkansas 201 Markham Center Drive, Little Rock, AR (ask front desk for room details, Meeting Time: 4 th Thursday of every months from 1:00pm-2:30pm Facilitator: Randi Haley ARIZONA TEMPE Contact: Jean Suico GILBERT Information: No Meeting Contact: Tandy King Facebook: Page 2 of 22

3 CALIFORNIA FREMONT Information: Non-profit for MSA Cure MSA Kathy Shih Memorial Foundation P.O. Box Fremont, CA USA Contact: Lily Shih (Executive Director) BURLINGAME Contact: Candy Welsh FOUNTAIN VALLEY Information: For family members and caregivers dealing with Atypical PD+ Disorders Location: Orange coast Memorial Medical Center, Classroom C, 9920 Talbert Ave Fountain Valley, CA Facilitator: Justin Aquines FREMONT Contact: Sandy Bierman Lily Shih GOLETA after 11am EST Contact: George Relles LIVERMORE Contact: Carol Dutcher Page 3 of 22

4 CALIFORNIA (continued) LOS ANGELES Information: Parkinsonian Disorders Support Group MSA,PSP, CBD, OPCA, SND, SDS, PD Location: Ronald Reagan UCLA Medical Center. 757 Westwood Plaza, Los Angeles, CA 90095, Conference Room 3102 Meeting Time(s): 1st Friday of every month from 2:00pm - 4:00pm (for directions only: ) Sponsors: Dr. Yvette Bordelon, UCLA Movement Disorder Department Facilitator: Loretta Mazorra RN,MN,MA, Nurse Practiioner Contact: Dolly West or MODESTO Information: No Meeting Contact: Janeice Partridge NORTHERN/SAN MATEO Information: 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 Meeting Time(s): Every six weeks (call or for schedule) from 5:00pm - 7:00pm Facilitator: Robin Riddle SAN DIEGO Information: For patients/caregivers dealing with Atypical Parkinsonian Disorders like MSA, PSP, CBD, OPCA, SND, SDS Location: UCSD Thornton Hospital, 9300 Campus Point Drive, La Jolla, CA 92037, SDG&E Room (3 rd floor) Meeting Time(s): 3rd Thursday of every month from 1:00pm -3:00pm (for directions only: ) Sponsors: Dr. Stephanie Lessig, UCSD & VA Movement Disorder Department Facilitator: John Jenkins SAN DIEGO Information: For ONLY caregivers dealing with Atypical Parkinson Disorders (MSA, PSP, CBD, OPCA) Location: Holy Angels Byzantine Catholic Church, 2235 Galahad Road, San Diego, CA Meeting Time(s): Every other month from 11:00am - 1:00pm Facilitator: Patricia Hagan Page 4 of 22

5 CALIFORNIA (continued) SANTA BARBARA Contact: Suzanne Grimmesey-Kirk THOUSAND OAKS Information: For patients/caregivers dealing with Atypical Parkinsonian + Disorders like MSA,PSP,CBD,OPCA,SND & SDS Location: 672 Rosario Drive, Thousand Oaks, CA Meeting Times: One Saturday every quarter from 1:00pm-4:00pm Call or for meeting date. Facilitator: Kathy Schwaiger Ceri Williams COLORADO DENVER/ENGLEWOOD Information: Neurodegenerative movement disorder group (MSA, PSP, CBD) Location: Johnson Adult Day Center, 3444 South Emerson St., Englewood, CO Meeting Time(s): 2nd Friday of each month from 10:00am - 12:00pm for Patients/Caregivers 4 th Friday of each month from 10:00am-12:00pm for Caregivers only Facilitator: Helenn Franzgrote JOHNSTOWN/LOVELAND Information: MSA,PSP,CBD Location: Northern Colorado Rehabilitation Hospital 4401 Union Street Johnstown/Loveland, CO Meeting Time: 1 st Friday of each month from 1:00pm - 3:00pm (No Dec/Jan meeting) Facilitator: Ruth Fletcher-Carter Page 5 of 22

6 FLORIDA BRADENTON Contact: Dan Stone Contact: Connie Ferguson HOLMES BEACH Contact: Connie Ferguson PORT ORANGE Contact: Jim Grant SOUTHEAST/DEERFIELD BEACH Information: 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: ) Meeting Time(s): Contact Facilitator for more info Facilitator: Paul Freeman SOUTHWEST/NAPLES Information: For patients/caregivers/families affected by MSA, PSP, CBD and related diseases Location: Manor Care at Lely Palms, 6135 Rattlesnake Hammock Road, Naples, FL Meeting Time(s): 2nd Saturday of each month from 2:00pm - 3:30pm Facilitator: Cindy MacDonald / Page 6 of 22

7 GEORGIA ATLANTA Information: For patients/caregivers living with Atypical Parkinsonism s, PSP and CBD Location: Wesley Woods Health Center, 1841 Clifton Rd, Atlanta, GA 30329, 3rd Floor Conference Room Meeting Time(s): 2nd Saturday of each month (except May) from 10:00am 11:30am Facilitator: Lynn Ross ELLIJAY Contact: Paula Davis INDIANA INDIANAPOLIS Contact: Gary Huddleston KOKOMO Information: For MSA Patients/caregivers Contact: Renate Sharp Chris Markiewicz Francie Hutton WARSAW Contact: Terry Shepherd ILLINOIS ORLAND PARK Contact: Arthur (Ed) Wall Page 7 of 22

8 CHICAGO AREA Information: MSA Support Meeting for Patients/Caregivers Meeting information: Quarterly meetings. Time and place announced on Facebook NE Central USA Page or Contact Facilitator. Facilitator: John Standley NORTHWESTERN AREA Information: For those with PD and other movement disorders Location: Northwestern Memorial Hospital 251 East Huron, Feinberg Pavilion, 3 rd Floor Room A (free parking at Huron/St. Clair) Meeting Time : 4 th Thursday of every month from 1:00-2:00 pm Facilitator: Pamela Palmentera IOWA WESTERN IOWA AREA Contact: Keryn Paul NEW LONDON Information: No Meeting Contact: Larry Kellerman KENTUCKY LOUISVILLE Information: Atypical Parkinsonian Disorders (MSA,PSP, CBD) Location: PSCKY Office, Middletown 315 Townepark Circle, Suite 100 Meeting Time: 2 nd Tuesday of every month 12:00pm-1:00pm Facilitator: Dan Heins Page 8 of 22

9 LOUISANA NEW ORLEANS Information: Patients/families/caregivers with PSP/CBD/MSA & related diseases Location: Little Farms United Church of Christ, 135 Sauve Road, River Ridge, LA Meeting Time(s): 3rd Thursday of each month from 7:00pm - 8:00pm Facilitator: Shiela Grose CLINTON Information: No Meeting Contact: Gloria Chaney MAINE MARYLAND FALMOUTH Information: 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: Janet Edmunson Barbi Johnson ANNE ARUNDEL COUNTY Information: For patients/caregivers affected by PSP, CBD & other neurodegenerative diseases Location: Kris Leigh Assisted Living Facility, 831 Ritchie Highway, Severna Park, MD Meeting Time(s):3 rd Saturday of every month from 1:00pm 3:00pm Facilitator: IIeen Watson BALTIMORE Information: For caregivers affect by Neurodegenerative diseases Location: Govans Presbyterian Church 5828 York Road, Baltimore, MD Peace Center Library. Meeting Time 4 th Thursday of every month Facilitator: Becky Dunlop,RN 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 Page 9 of 22

10 Meeting Times: 4 th Thursday of every month from 2pm-4pm Facilitatior: Becky Dunlop, RN ELDERSBURG Contact: Shirley Snyder PRINCE FREDERICK Contact: James Taylor MASSACHUSETTS MICHIGAN BOSTON Information: For MSA Patients/Caregivers Location: Boston University Medical Center; 88 East Newton Street, 2 nd floor, Conf Rm C, Boston, MA Meeting Time: quarterly Facilitator: Melissa Diggin Or contact: Carol Langer 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 Carl Billington DETROIT Information: Non Profit for MSA Joseph G Fortier Foundation for MSA P.O. Box St. Clair Shores, MI USA Page 10 of 22

11 We move today, in service of tomorrow! Contact: Philip M Fortier (Co-Director) (cell/vm) 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 DELTON Information: For patients, caregivers and families with PSP, CBD, MSA and other atypical parkinsonian location: 1137 Floria Drive, Delton, MI (park in church parking lot) Meeting Time : 2nd Saturday of each month from 2:00pm-3:30 pm beginning April 12, 2014 Facilitator : Mary Meagher MINNESOLA MINNEAPOLIS Information: For patients and families dealing with PSP, CBD, MSA Location : Struther's Parkinson's Center 6701 Country Club Drive, Golden Valley, MN Meeting Time: 2nd Wednesday of every month from 1:00pm -2:30pm Facilitator: Joan Hlas MONTANA NEBRASKA KALISPELL Contact: Gary Cuthbertson OMAHA Contact: Keryn Paul Page 11 of 22

12 NEVADA LINCOLN Information: For caregiver and families dealing with PSP, CBD, MSA and others Atypical PD Location: 5901 N. 27th Street, Lincoln, NE Meeting Time: 4th Tuesday of every month from 6:30pm-8:30pm (beginning Jan 28, 2014) Facilitator: Susie Luxford LAS VEGAS Contact: Marty Koppel please leave message if no answer NEW HAMPSHIRE NEW JERSEY CONCORD Information: No Meeting Contact: Gayle Gardner TRI-STATE AREA Information: Non profit support group covering the tri-state area MSA NJ P.O. Box 773 Howell, NJ Contact: Cynthia Roemer CAPE MAY Information: 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: 1 st Tuesday of every month 1:00pm -3:00 pm Facilitator: Bonnie Kratzer MOORESTOWN (5 minutes from Philly and 30 from Trenton) Contact: Rachel Zambrano Page 12 of 22

13 NEW MEXICO ALBUQUERQUE Information: For patients, caregivers and families affected by PSP, CBD, MSA and Atypical PD Location: The Flying Star Corrales Road, Albuquerque, NM Meeting Time : 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 NEW YORK TRI-STATE AREA Information: Non profit support group covering the tri-state area MSA NJ P.O. Box 773 Howell, NJ Contact: Cynthia Roemer BUFFALO Contact: Maureen Conley NEW YORK CITY Information: For MSA patients/caregivers Location: Contact Michael DeMarsico for location Meeting Time: 3 rd Saturday of each month from 2:00pm-4:30pm Contact: Michael DeMarsico NEW YORK CITY METRO AREA Information: For patients/caregivers dealing with Atypical Parkinsonian Disorders like PSP, CBD, MSA, OPCA, SND, SDS Location: North Shore University Hospital, Tower Conference Rooms, First Floor, 300 Community Drive, Manhasset, NY Meeting Time(s): 3rd Saturday Quarterly from 1:30pm - 3:30pm Facilitators: Kara Holisher Harriet Feiner Page 13 of 22

14 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 Meeting times: 4 th Tuesday of each month from 12:30PM-2:30PM Contact: Wayne Hamilton NORTH CAROLINA CHARLOTTE Contact: Robert Lee RALEIGH Contact: Joe Turner Melissa Turner ADVANCE Contact: Tammy Hunt Hauser OHIO BEREA Information: For patients/families/friends/caregivers affected by PSP, CBD, MSA, Shy-Drager+ Lewy Bodies Location: Southwest General Hospital, Bagley Road, Middleburg Heights, OH, Room 15C (basement level) Meeting Time(s): 2nd Sunday of each month from 1:00pm - 3:00pm Directions/Parking: Hospital is easy accessed from I-480, I-71 and the Ohio Turnpike - free parking rear garage of hospital. Facilitator: Pat Beekman CINCINNATI Contact: Kathy Griffin Page 14 of 22

15 KETTERING Information: For MSA patients/caregivers Meeting Time(s): A get together is arranged in this area a couple times a year Contact: Susan Cervone WESTERVILLE Information: For MSA caregivers Meeting Time(s): Occasional meetings are now being held Contact: Cathy Rapenport OKLAHOMA GROVE Contact: Paul Nandico OREGON PORTLAND Information: For MSA Patients /Caregivers Location: Marquis Care Center, 319 NE Russet ST, Portland, OR Meeting Time: 3rd Saturday of each month 10 am to noon Facilitator: Vicki Blacken PORTLAND Information: For families & caregivers of people with PSP & CBD also welcomes MSA Locations: OHSU River side building Room SW Bond St. Portland, OR Meeting Time: 1st Thursday of each month at 5:30pm Facilitator: Tod Lundy BEND Contact: Nena Close (cell) (work) Page 15 of 22

16 PENNSYLVANIA TRI-STATE AREA Information: Non profit support group covering the tri-state area MSA NJ P.O. Box 773 Howell, NJ Contact: Cynthia Roemer N.VERSAILLES Contact: Carole Barber PHILADELPHIA Information: No Meeting Contact: Liz Martin PHILADELPHIA Information: For persons with movement disorders Location: Pennsylvania Hospital Movement Disorder Center, 330 S. 9 th Street, 2 nd floor conference room. Philadelphia, PA Meeting Time: 3 th Saturday of each month from 1:00pm to 2pm Facilitator: Christin Salemno YORK Contact: Thomas Fitzgerald PUERTO RICO Information: No Meeting Contact: Alexis Brewer Page 16 of 22

17 RHODE ISLAND CRANSTON Information: No Meeting Contact: Jan Gillis SOUTH DAKOTA SIOUX FALLS Contact: Dawn Koenig TENNESSEE TULLAHOMA Contact: Marilyn Morris TEXAS 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: 1 st Tuesday of each month at 2:30 pm Facilitator: Gary & Sally Dixner ARLINGTON Contact: Barbara Selleck HOUSTON Information: 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 Page 17 of 22

18 VERMONT VIRGINIA DALLAS Information: 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 SEYMOUR Information: For patients & caregivers affected by MSA,PSP,CBD & Atypical PD+ Location: Baylor Country Extension Building 500 N. Main Street Seymour,TX Meeting Time: 3 rd Monday of each month from 4:00pm-5:30pm Facilitator: Sis Hammack SAN ANTONIO Contact: Sharon Sutton Candice Valenta BURLINGTON Information: 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 AMISSVILLE Information: 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 ANNANDALE Information: For patients, caregiver, and families dealing PSP,CBD, MSA and Atypical PD Location: George Mason Regional Library, 7001 Little River Turnpike, Annandale, VA Meeting time: 2 nd Thursday of every month from 7:00pm -9:00pm Facilitator: Kristin Washington, Page 18 of 22

19 VIRGINIA BEACH Contact: James (Jim) Alvaro WASHINGTON SPOKANE Information: For patients/caregivers with PSP/CBD but supports other neurodegenerative diseases Location: Contact facilitator for info Meeting Time(s): Contact facilitator for info Facilitator: Mary Anne Memminger Jim Barron SEATTLE Information: For Patients/Caregivers with MSA Location: Virginia Mason Medical Center 1201 Terry, Seattle, WA Change location starting January 2014 to Exeter House 720 Seneca St. Seattle,WA Meeting Time: 4 th Monday of each month at 11:00 am Contact: Carin Mack WEST VIRGINIA BECKLEY Information: 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 Page 19 of 22

20 MARTINSBURG Contact: Shelli Hannon Kuhn WISCONSIN MILWAUKEE Information: Phone Support, but looking for interest for a support group. Location: Milwaukee or the surrounding areas Contact: Aaron Kittson WYOMING JOHNSTOWN/LOVELAND (COLORADO) Information: Neurodegenerative disorder (MSA,PSP,CBD) Location: Northern Colorado Rehabilitation Hospital, 4401 Union Street, Johnstown/Loveland, CO Meeting Time: 1st Friday of each month from 1:00 pm - 3:00pm Facilitators: Ruth Fletcher-Carter CANADA ALL PROVINCES Page 20 of 22

21 Information: No Meeting and Website for MSA information only Multiple System Atrophy Awareness Website: Spreading awareness worldwide Contact: Pam Bower or ALBERTA FORT MCMURRAY - Contact for the northern region of Alberta Contact: Iris Kirschner BRITISH COLUMBIA SIDNEY Contact: Ann Jeffrey NOVA SCOTIA HALIFAX Information: No Meeting and Website for MSA information only Contact: Pam Bower or Website: ONTARIO HAMILTON Contact: Bonnie Llewellyn Page 21 of 22

22 BURLINGTON Information: 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): 1st Thursday of every month from 6:30pm - 8:30pm (beginning October 3, 2013) Facilitator: Kimberley Adrovez KINGSTON Information: 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 beginning August 1, 2013 Facilitator: MJ Overby TORONTO Information: For care partners of PSP/CBD/MSA patients; hosted by Parkinson Society of Central & Northern Ontario Location: 4211 Yonge Street, Suite 321, Toronto, ON Meeting Time(s): 3rd Wednesday of every month from 6:15pm 8:00pm Facilitator: Robert TerSteege / x3372 Page 22 of 22

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