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) vjames@msacoalition.org Judy Biedenharn RN (OH USA) jbiedenharn@msacoalition.org 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) clanger@msacoalition.org Don Crouse (NC USA) dcrouse@msacoalition.org Pam Bower (NS CANADA) pbower@msacoalition.org Larry Kellerman (IA USA) lkellerman@msacoalition.org Phil Fortier (MI USA) pfortier@msacoalition.org Tom Looney (NC USA) tlooney@msacoalition.org Cynthia Roemer (NJ USA) croemer@msacoalition.org Sharon Sutton (TX USA) ssuton@msacoalition.org 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 janiecenjim@gmail.com 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 randirhaley@yahoo.com ARIZONA TEMPE Contact: Jean Suico Suicoaz@aol.com 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 anlom@sbcglobal.net Contact: Dolly West or MODESTO Information: No Meeting Contact: Janeice Partridge elipartridge@att.net 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 robin.riddle@brainsupportnetwork.org 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 jenkins356@sbcglobal.net 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 pkhagan@cox.net 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 ksquig2@yahoo.com Ceri Williams medianet@earthlink.net 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 jhfranzgrote@comcast.net 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 chantillylace3@usa.net 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 / hotrdh@hotmail.com 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 ppalment@nmff.org IOWA WESTERN IOWA AREA Contact: Keryn Paul kmpaul@cox.net NEW LONDON Information: No Meeting Contact: Larry Kellerman rurlfolk1@yahoo.com 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 danheins@gmail.com 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 groseshiela@bellsouth.net CLINTON Information: No Meeting Contact: Gloria Chaney gcathome@hughes.net 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 janet@janetedmunson.com 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 ileenw@verizon.net 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 rdunlop@jhmi.edu 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 rdunlop@jhmi.edu ELDERSBURG Contact: Shirley Snyder Gramme835@gmail.com PRINCE FREDERICK Contact: James Taylor jtaylor@guam.net 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 m_diggin@hotmail.com Or contact: Carol Langer carollanger@comcast.net 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 jgf.foundation.msa@gmail.com Page 10 of 22
11 We move today, in service of tomorrow! Contact: Philip M Fortier (Co-Director) (cell/vm) fortiepm@udmercy.edu 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 robbie@daytimesleeper.com 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 mmeagher@mei.net 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 Grandmamt@centurytel.net OMAHA Contact: Keryn Paul kmpaul@cox.net 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 jkratzer@caperegional.com MOORESTOWN (5 minutes from Philly and 30 from Trenton) Contact: Rachel Zambrano Rachelzambrano@comcast.net 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 contact@msanj.org BUFFALO Contact: Maureen Conley moe@moeconley.com 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 mickpub@hotmail.com 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 kbhx2@optonline.net Harriet Feiner hfeiner@nyc.rr.com 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 sparrowln@carolina.rr.com RALEIGH Contact: Joe Turner Jpturner2011@gmail.com Melissa Turner mrsmelissajturner@gmail.com ADVANCE Contact: Tammy Hunt Hauser hausertammy@hotmail.com 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 mombeekman@yahoo.com CINCINNATI Contact: Kathy Griffin kgriffin4412@msn.com 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 FrankunSusan@aol.com WESTERVILLE Information: For MSA caregivers Meeting Time(s): Occasional meetings are now being held Contact: Cathy Rapenport cathyrap83@gmail.com 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 vblacken@web-ster.com 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 talktotod@gmail.com BEND Contact: Nena Close (cell) (work) nena.close@gmail.com 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 christin.salemno@uphs.upenn.edu YORK Contact: Thomas Fitzgerald PUERTO RICO Information: No Meeting Contact: Alexis Brewer alexis_brewer_200@yahoo.com 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 barbaraselleck@sbcglobal.net 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 kmk1224@aol.com 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 kathmac@linkrd.com 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 Bradnsis@swbell.net SAN ANTONIO Contact: Sharon Sutton saksutton@aol.com Candice Valenta cleo0308@yahoo.com 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 janclem25@gmail.com 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 rwwerre@comcast.net 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, krwashin@gmail.com 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 socialwkr@earthlink.net 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 grammy44@suddenlink.net 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 kittsoan@uwec.edu 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 chantillylace3@usa.net 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 ikirschner@shaw.ca BRITISH COLUMBIA SIDNEY Contact: Ann Jeffrey island.view@shaw.ca NOVA SCOTIA HALIFAX Information: No Meeting and Website for MSA information only Contact: Pam Bower pam.bower@msaawareness.org or pbower@accesscable.net Website: ONTARIO HAMILTON Contact: Bonnie Llewellyn llegs369@live.ca 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 kimberleyadrovez@yahoo.com 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 hopematterspspkingston@gmail.com 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 robert.tersteege@parkinson.ca Page 22 of 22
List of Support Meetings & phone/email support USA and Canada
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