in person support meetings usa and canada · 1/23/2019 · contact: carol dutcher 925-998-3656...
Post on 25-Oct-2020
2 Views
Preview:
TRANSCRIPT
In Person Support Meetings
USA and Canada
Page 1 of 25
This list is maintained by Pam Bower pbower@msacoalition.org 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 lkellerman@msacoalition.org 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.
In Person Support Meetings
USA and Canada
Page 2 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
MSA COALITION BOARD OF DIRECTORS Chair Cynthia Roemer Howell NJ 866-737-4999 x207 croemer@msacoalition.org Vice Chair Don Crouse Charlotte NC 866-737-4999 x203 dcrouse@msacoalition.org Treasurer Carol Langer Boston MA 866-737-4999 x205 clanger@msacoalition.org Secretary Pam Bower Halifax NS
CANADA 866-737-4999 x204 pbower@msacoalition.org
Patient Representative
Hadley Ferguson Missoula MT patientrep@msacoalition.org
Outgoing Caregiver Rep
Diane Adkins Stephens City VA
866-737-4999 x214 caregiver@msacoalition.org
Incoming Caregiver Rep
Elaine Douglas Seattle WA elainedouglas@me.com
Steve Klisares Dunlap IL 866-737-4999 x211 sklisares@msacoalition.org Larry Kellerman Washington IL 866-737-4999 x209 lkellerman@msacoalition.org Neil Versel Chicago IL 866-737-4999 x210 nversel@msacoalition.org Allyson Mayeux Marshfield WI 866-737-4999 x215 amayeux@msacoaliton.org Scientific Liaison
Vik Khurana Boston MA vikram_khurana@icloud.com
Medical Liaison
Daniel Claassen Nashville TN daniel.claassen@vumc.org
Past Chair (Emeritus)
Judy Biedenharn Grove City OH 866-737-4999 x201 jhbied@wowway.com
Past Chair (Emeritus)
Vera James Walnut CA granmaj@gmail.com
Founder, Medical Advisor (Emeritus)
David Robertson Nashville TN david.robertson@Vanderbilt.Edu
Medical Advisor (Emeritus)
Thomas Chelimsky Milwaukee WI tchelimsky@mcw.edu
SCIENTIFIC/MEDICAL ADVISORY BOARD
Thomas Chelimsky, M.D. Milwaukee WI tchelimsky@mcw.edu Phillip Low, M.D. Rochester MN low@mayo.edu Steven Vernino, M.D., Ph.D. Dallas TX steven.vernino@utsouthwestern.edu Gregor K. Wenning, M.D., Ph.D. Innsbruck Austria gregor.wenning@i-med.ac.at Wassilios Meissner, M.D.,Ph.D. Bordeaux France wassilios.meissner@chu-bordeaux.fr Anthony Lang, M.D. Toronto Canada anthony.lang@uhnresearch.ca Glenda Halliday, Ph.D. Sydney Australia glenda.halliday@sydney.edu.au Outgoing SAB Chair (Emeritus)
David Robertson, M.D. Nashville TN david.robertson@Vanderbilt.Edu
In Person Support Meetings
USA and Canada
Page 3 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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 janiecenjim@gmail.com
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 randirhaley@yahoo.com
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
In Person Support Meetings
USA and Canada
Page 4 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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 catman17rln@aol.com BURLINGAME
Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Candy Welsh 650-218-5858 cortez1us@yahoo.com
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 atypicalpdgroup@gmail.com 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 lily@curemsa.org FREMONT Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Sandy Bierman 510-656-6897 sandybierman@yahoo.com Lily Shih 510-226-0453 liyshih1@comcast.net GOLETA Information updated as of Dec 2016: No Meeting Phone/email Support Only after 11am EST Contact: George Relles 805-683-4829 grelles@cox.net
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 djperdue@cox.net
LIVERMORE Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Carol Dutcher 925-998-3656 califalck@gmail.com
In Person Support Meetings
USA and Canada
Page 5 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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 anlom@sbcglobal.net To RSVP and for Further Information contact Dolly West dwest@mednet.ucla.edu or phone: 310-206-2154.
MODESTO
Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Janeice Partridge elipartridge@att.net 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 robin.riddle@brainsupportnetwork.org
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 darlene.gerow@gmail.com
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 judychamuler@yahoo.com
In Person Support Meetings
USA and Canada
Page 6 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
SANTA BARBARA Information updated as of Dec 2016: No Meeting Phone/email Support Only
Contact: Suzanne Grimmesey 805-455-5194 sgrimmesey@gmail.com 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 jhfranzgrote@comcast.net
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 chantillylace3@usa.net
FLORIDA
JACKSONVILLE Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Shirley Snyder 904-207-5501 Gramme835@gmail.com
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 freemanph@aol.com 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
In Person Support Meetings
USA and Canada
Page 7 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
Facilitator: Cindy MacDonald 239-353-3960/239-404-4429 hotrdh@hotmail.com NAPLES Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Tenley Smith 630-337-1314 Tenswims@gmail.com
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 slross@emory.edu
ATLANTA Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Kathy Hansen 678-371-5139 Kathyhansen58@hotmail.com
ELLIJAY Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Paula Davis 706-669-1978 jimandpaula@ellijay.com
SMYRNA Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Dan Gallivan gall63553@gmail.com
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 ozzieboyle@gmail.com IDAHO
BOISE Information updated as of Jan 2019: No Meeting Phone/email Support Only Contact: Tiffany Christensen 208-389-8022 moveovermsa@gmail.com
ILLINOIS
In Person Support Meetings
USA and Canada
Page 8 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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 Mziklvrs@yahoo.com
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 ppalment@nmff.org
INDIANA INDIANAPOLIS
Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Gary Huddleston 317-501-4899 garylovesjoyce@yahoo.com KOKOMO Information updated as of Dec 2016: For MSA Patients/caregivers Contact: Renate Sharp 765-453-5351 rsbreslau@yahoo.com Chris Markiewicz 765-513-5219 atacrew@aol.com Francie Hutton 765-453-9020 huttondf20@aol.com
WARSAW Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Terry Shepherd 574-267-1566 tellmenolies2004@yahoo.com
IOWA
WESTERN IOWA AREA Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Keryn Paul 402-813-7315 kmpaul@cox.net
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 danheins@gmail.com
In Person Support Meetings
USA and Canada
Page 9 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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 groseshiela@bellsouth.net
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 rockyledges85@gmail.com WELLS Information updated as of Dec 2016: No Meeting Email Support Only Contact: Gayle Gardner ggcpteach@comcast.net or nauticalmile102@gmail.com
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 rdunlop@jhmi.edu
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 egreene@som.umaryland.edu
In Person Support Meetings
USA and Canada
Page 10 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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 jtaylor@guam.net
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 m_diggin@hotmail.com
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
In Person Support Meetings
USA and Canada
Page 11 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
Information updated as of Dec 2016: Non Profit for MSA Defeat MSA & The MSA Shoe 29924 Jefferson Avenue Saint Clair Shores, MI 48082 Email: DefeatMSA@gmail.com 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 mmeagher@mei.net
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
In Person Support Meetings
USA and Canada
Page 12 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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 Mnnightrn@gmail.com
MONTANA
KALISPELL Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Gary Cuthbertson 406-257-4392 Grandmamt@centurytel.net
NEBRASKA
OMAHA Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Keryn Paul 402-813-7315 kmpaul@cox.net
LINCOLN Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Susie Luxford 402-525-7367 susie.luxford@homerealestate.com
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 contact@msanj.org Phone MSA NJ: 732-903-8517
Monthly Meetings
In Person Support Meetings
USA and Canada
Page 13 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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 jkratzer@caperegional.com 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 Rachelzambrano@comcast.net
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 contact@msanj.org Phone MSA NJ: 732-903-8517
Quarterly Meetings Planned
In Person Support Meetings
USA and Canada
Page 14 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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 moe@moeconley.com NEW YORK CITY METRO AREA Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Kara Holisher 516-932-1696 kbhx2@optonline.net BROOKLYN Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Caitlin Connelly 845-901-8411 cconnelly@me.com
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 jvanden1@twcny.rr.com NORTH CAROLINA
CHARLOTTE Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Robert Lee 704-552-9198 sparrowln@carolina.rr.com RALEIGH Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Joe Turner 919-971-3512 Jpturner2011@gmail.com Melissa Turner 919-741-9668 mrsmelissajturner@gmail.com ADVANCE Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Tammy Hunt Hauser 336-998-2942 hausertammy@hotmail.com
In Person Support Meetings
USA and Canada
Page 15 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
HIGH POINT Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Amy Nissen acnissen@northstate.net
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 davepotter7@gmail.com 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 calvelageb@yahoo.com Paul Reams preams1@yahoo.com
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 FrankunSusan@aol.com WESTERVILLE Information: For MSA caregivers Meeting Time(s): Occasional meetings are now being held Contact: Cathy Rapenport 614-403-1440 cathyrap83@gmail.com
OKLAHOMA
GROVE Information: No Meeting Phone Support Only Contact: Paul Nandico 918-786-4949
OREGON
In Person Support Meetings
USA and Canada
Page 16 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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) nena.close@gmail.com
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 bookmole@comcast.net
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 htbradley@netscape.net
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 contact@msanj.org 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
In Person Support Meetings
USA and Canada
Page 17 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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 barber.carole@juno.com 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 alexis_brewer_200@yahoo.com
SOUTH DAKOTA
SIOUX FALLS Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Dawn Koenig 605-759-6740 dkoenig@pompstire.com
TENNESSEE
TULLAHOMA Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Marilyn Morris 913-455-3108 mgm12@lighttube.net
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
In Person Support Meetings
USA and Canada
Page 18 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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 kmk1224@aol.com
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 kathmac@linkrd.com 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 CatrinaNieser@texashealth.org 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 Bradnsis@swbell.net
SAN ANTONIO Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Sharon Sutton 210-296-4619 saksutton@aol.com Candice Hernandez 210-912-4530 cleo0308@yahoo.com
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 janclem25@gmail.com
VIRGINIA
In Person Support Meetings
USA and Canada
Page 19 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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 rwwerre@comcast.net VIRGINIA BEACH Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: James (Jim) Alvaro 757-430-2237 jimalvaro@verizon.net
WASHINGTON
SPOKANE Information updated as of May 2017: No Meeting Phone/email Support Only Contact: Amy Mitchell 509-939-2370 Mitchelljak@comcast.net
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 suzanna.eller@swedish.org
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 grammy44@suddenlink.net
MARTINSBURG Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Shelli Hannon Kuhn 717-830-6199 shelli.kuhn@jetsndt.com
WISCONSIN
SPARTA
In Person Support Meetings
USA and Canada
Page 20 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
Information updated as of Apr 2018: No Meeting Phone/email Support Only Contact: Kathy Griffin 513-208-6621 kgriffin4412@msn.com
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 chantillylace3@usa.net
LANDER Information updated as of Apr 2018: No Meeting Phone/email Support Only Contact: Cathy Chapman 307-332-4144 cec@wyoming.com
~~~~~~~~~ End of USA In-Person Support Groups ~~~~~~~~
In Person Support Meetings
USA and Canada
Page 21 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
CANADA
ALL PROVINCES
Information updated as of Jan 2019: No Meeting Email Support Only Contact: Pam Bower pbower@msaawareness.org or pbower@accesscable.net
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 ikirschner@shaw.ca 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 claphamk@telus.net
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 curepspbc@gmail.com Robyn Heppner 604-584-7587 x2020 rheppner@elimvillage.com SIDNEY Information updated as of Dec 2016: No Meeting Phone/email Support Only Contact: Ann Jeffrey 250-656-9799 island.view@shaw.ca
NOVA SCOTIA
In Person Support Meetings
USA and Canada
Page 22 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
HALIFAX Information updated as of Jan 2019: No Meeting Email Support Only Contact: Pam Bower pbower@msaawareness.org or pbower@accesscable.net
ONTARIO
HAMILTON Information updated as of Jan 2019: No Meeting Phone/email Support Only Contact: Bonnie Llewellyn 905-979-8254 llegs369@live.ca
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 kimberleyadrovez@yahoo.com
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 hopematterspspkingston@gmail.com
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 robert.tersteege@parkinson.ca
~~~~~~~~~ End of Canada In-Person Support Groups ~~~~~~~~
In Person Support Meetings
USA and Canada
Page 23 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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: shydrager-owner@yahoogroups.com
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/
In Person Support Meetings
USA and Canada
Page 24 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
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 fvjames@aol.com www.facebook.com/vera.james Moderator: Pam Bower pbower@msaawareness.org 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 kymcrowe39@gmail.com www.facebook.com/omgkym
In Person Support Meetings
USA and Canada
Page 25 of 25
This list is maintained by Pam Bower pbower@msacoalition.org Updated: January 23, 2019
Moderator: Susan Cervone FrankunSusan@aol.com 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, tom.tait@comcast.net, 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 cec@wyoming.com
top related