Multiple System Atrophy Awareness

Spreading awareness worldwide

Online MSA Communities


If you don’t see a group that meets your needs or if you have trouble joining please contact Pam.Bower@msaawareness.org

POPULAR GROUPS OFFERING SUPPORT:

shydrager (Multiple System Atrophy) Yahoo online support Group – 1900+ members – the first worldwide MSA discussion group on the internet, it began as an email listserv founded in 1995 by Vanderbilt University staff.  This group delves deeply into discussions of symptom management and caregiving issues.  This is a CLOSED PRIVATE GROUP, only members may post and search the archives.   There are over 150,000 past messages which can be searched to find mention of symptoms, medications and equipment etc.  (Admin: Pam Bower, Vera James, Suzanne Burke, Debbie White, John Standley, Robin Riddle)

Multiple System Atrophy (MSA) - 2900+ members – OPEN PUBLIC GROUP with worldwide membership.  (Admin:  Stephanie Miranda Willcocks and Ruth Miranda Hardy)

MSA Buddies -  1500+ members - CLOSED PRIVATE GROUP –  with many MSA patients.  (Admin: Todd Cowsky)

MSA – A Caregiver’s Journey – 150+ members – CLOSED SECRET GROUP – This group is for caregiver’s only, by invitation.  To request an invitation please contact Kym Crowe kymcrowe39@yahoo.com.  Also if you are facebook friends with a member of the group they can invite you.  Only caregivers please.  Past caregivers are also welcome.  You can also email Vera James fvjames@aol.com or Pam Bower pam.bower@msaawareness.org and they can help connect you to this group,

MSA – A Patient’s Journey – 50+ members – CLOSED SECRET GROUP – This group is for patients only, by invitation.  Caregivers may type for the patient if needed but the discussion is between patients only please.  To request an invitation please contact Vera James fvjames@aol.com or Pam Bower pam.bower@msaawareness.org

MSA Non-Profit Charities(USA):

Multiple System Atrophy Coalition on Facebook – 4500+ fans – The First US Non-Profit Charity for MSA established in 1989

Contact:

Toll Free MSA Support line: 1-866-737-5999

Support: Vera James vjames@msacoalition.org – MSA Support line: 1-866-737-5999
Support: Judy Biedenharn jbiedenharn@msacoalition.org - MSA Support line: 1-866-737-5999

Patient Representative: Tom Looney – tom_looney@hotmail.com
Caregiver Representative: Larry Kellerman – Check out Larry’s facebook page! – rurlfolk1@yahoo.com

Fundraising/PR/Administration: Don Crouse dcrouse@msacoalition.org
Financial/Administration: Carol Langer clanger@msacoalition.org
Research/Awareness: Pam Bower pbower@msacoalition.org
Fundraising/Awareness: Cyndi Roemer croemer@msacoalition.org
Fundraising/Awareness: Philip Fortier pfortier@msacoalition.org
Education/Advocacy: Sharon Sutton SakSutton@aol.com

Call Toll Free (US only): 1-866-737-4999 or 1-866-737-5999

Website: www.multiplesystematrophy.org

Cure MSA – Kathy Shih Memorial Foundation 2200+ fans (Contact: Lily Shih)

MSA NJ – 700+ fans New Jersey based group offering support to the tri-state area  (Contact: Cynthia Roemer, Kym Roemer)

Defeat MSA: Joseph G. Fortier Foundation 500+ fans(Contact: Philip Fortier)

National Ataxia Foundation 4500+ fans (Contact: Michael Parent)

CurePSP 5800+ fans (Contact:  Trish Caruana)

USA REGIONAL GROUPS:

These smaller groups allow for closer connections to people from your geographic area.

The above map from the US census shows the 9 USA regions.  This map corresponds to each of the 9 regional MSA groups. Please click the links below to join the groups that interest you.

MSA New England states USA (ME-NH-VT-CT-RI-MA) – OPEN PUBLIC GROUP – 150+ members

MSA Middle Atlantic states USA (NY-NJ-PA) – OPEN PUBLIC GROUP - 175+ members

MSA Northeast Central states USA (IN-IL-MI-WI-OH) – OPEN PUBLIC GROUP – 250+ members

MSA Northwest Central states USA (IA-KS-MN-MO-ND-SD-NE) – OPEN PUBLIC GROUP - 100+ members

MSA South Atlantic states USA (DE-DC-FL-GA-MD-NC-SC-VA-WV) – OPEN PUBLIC GROUP – 200+ members

MSA Southeast Central states USA (AL-KY-MS-TN) – OPEN PUBLIC GROUP - 100+ members

MSA Southwest Central states USA (TX-OK-LA-AR) – OPEN PUBLIC GROUP – 175+ members

MSA Mountain states USA (AZ-CO-ID-NM-MT-UT-NV-WY) – OPEN PUBLIC GROUP – 100+ members

MSA Pacific states USA (CA-OR-WA-HI-AK) – OPEN PUBLIC GROUP – 200+ members

AWARENESS RAISING GROUPS:

Miracles for MSA -  5800+ fans - Miracles for MSA aims to reach all touched by Multiple System Atrophy and encourage them to take action in spreading awareness, raising money and inspiring hope.  This is the group to stay in touch with for news of MSA awareness campaigns and fundraising activities.   Each March the group proclaims March as Multiple System Atrophy Awareness month and there is a flurry of activity.  Every year October 3rd is declared World MSA Day.  Be sure to check back with the group often for updates.  It’s also a great site to share with family and friends who may wish to be more involved with fundraising and awareness. (Admins: Pam Bower, Kim Jackson & Cynthia Roemer – Founded by Anna Langerveld, inspired by Bob and Susan Summers and Fernando Bryant)

Multiple System Atrophy Awareness Month (MARCH) 1600+ fans (Admin:  Pam Bower – Canada, Cynthia Roemer – USA, Kim Jackson – USA, Sara Soderstrom – USA, Rita Schouppe-Moons – Belgium, Karin Holtzhausen – South Africa)

World MSA Day: Worldwide Action: A Mile & A Candle for MSA (OCTOBER 3rd) 350+ members (Admin: Rita Schouppe-Moons – Belgium, Janet Saad – South Africa, Pam Bower – Canada) OPEN PUBLIC GROUP

Where is Tim’s Shoe????? - 2500+ fans – It began as a joke that morphed into a movement for MSA awareness.  Tim’s Shoe was stolen right off Tim’s foot and then the journey began.  Check out the site to see photos of where Tim’s Shoe is now, one major highlight is his trip to the London Olympics in August 2012.   You can ask to host Tim’s Shoe to raise awareness of MSA in your area.   (Admin: Philip Fortier) See  the video: “Raising awareness for a rare disease through the simplicity of a shoe”

GROUPS FOCUSED ON RESEARCH DISCUSSION:

Multiple System Atrophy News – OPEN PUBLIC FORUM – 1600+ members - This group is focused on discussions of current MSA Research news.  Several MSA researchers are members of this group.  ( Admin: Pam Bower  – If you have research expertise and would like to contribute to this discussion group please contact pbower@accesscable.net)

Professor Gregor K. Wenning - 1700+ fans

Research for MSA and Newest Articles – Admin: Rita Schouppe-Moons

SMALLER GROUPS:

Patients Like Me MSA Community 600+ members (Admin: Patients Like Me staff)

Multiple System Atrophy (MSA) Support Group -  MSA Support Group page offers experience, strength, and support to all affected by this rare and degenerative disease. 250+ members (Admin: Alexandra Lander)

Living Day by Day with MSA -  Open support forum for MSA patients, family members, caregivers 150+ members (Admin: Bill Sydnor)

Saving Grace MSA -  Saving Grace is designed for family members and victims to connect. 150+ members (Admin: Ashley Sourapas)

Multiple Systems Atrophy – 150+ members (Admin: Jeannie Gibson)

MSA One Day At A Time – Brenda’s Journey 175+ members (In memory of: Brenda Paquet)

NEWER GROUPS LOOKING FOR NEW MEMBERS:

Kids of MSAClosed group for younger family members of MSA patients (up to age 25). (Admin: Angelina Marie Cervone)

Divorced and Living with MSA – open page

Caring for the Carers – open page (Admin: Nicky Davies)

 

GROUPS FOR OTHER LANGUAGES:

Rare Disease Community for Multiple System Atrophy:

English: https://www.rareconnect.org/en/community/multiple-system-atrophy

Italiano:  https://www.rareconnect.org/it/community/atrofia-multisistemica

Deutsche:  https://www.rareconnect.org/de/community/multiple-system-atrophie

Espanol:  https://www.rareconnect.org/es/community/atrofia-multisistemica

Francais:  https://www.rareconnect.org/fr/community/atrophie-multisystematisee-ams

Atrofia de Multiplis Sistemas (Brazil) (Portuguese)

MSA Spain (Espanol)

MSA Multipele systeematrofie (Dutch, Francais, English)

MSA Germany (Deutsche)

MSA (Multiple System Atrophy) South Africa (Afrikaans, English)

Atofia Multi-Sistemica (AMS) (Italiano)

SCD – MSAサポートグループ (Japanese)

MEMORIALS TO THOSE LOST TO MSA:

Charmayne’s Wall of Remembrance (Admin: Charmayne Bischel)

Multiple System Atrophy (MSA) Angels (Admin: Todd Cowsky)

In Loving Memory of those lost to MSA (Admin: Mona Law, John Standley, Charmayne Bischel)

REGIONAL GROUPS (Non-USA):

These smaller groups allow for closer connections to people from your geographic area.

AUSTRALIA & NEW ZEALAND:

MSA Australia & New Zealand – 100+ members

BENELUX COUNTRIES: (BELGIUM, NETHERLANDS, LUXEMBOURG):

MSA Multipele systeematrofie

MSA-AMS.be

BRAZIL:

Atrofia de Multiplis Sistemas (Brazil)

CANADA:

MSA Canada 200+ members (English & French) – (Admin: Cathy Murphy, Brenda Paquet, Pam Bower, Amelia Levy)

Parkinson Society Canada

DENMARK:

MSA Parkinson Plus

FRANCE:

ARAMISE forum 350+ members

GERMANY:

MSA Germany

INDIA:

MSA India

ITALY:

Atofia Multi-Sistemica (AMS)

Uniti x curare la PSP Paralisi Sopranucleare Progressiva

JAPAN:

SCD – MSAサポートグループ

MALAYSIA:

MSA Group Malaysia – facebook page

NETHERLANDS:

Fietsen voor MSA – 100+ members

NIGERIA:

FF Foundation (Nigeria) – 100+ members

SOUTH AFRICA:

Orange MSA (South Africa)

MSA (Multiple System Atrophy) South Africa – 100+ members

SPAIN:

MSA Spain

UK and IRELAND:

Multiple System Atrophy Trust (UK non-profit) 2000+ members

MSA Trust online forum

MSA UK and IRELAND 100+ members

MSA Support Ireland

 

PETITIONS – GoPetition:

Multiple System Atrophy Petition 2000+ signatures

PRESS RELEASES:

2013-02-05: March is Multiple System Atrophy Awareness Month 5800+ hits as of 1-Apr-2-13

2012-04-22: Multiple System Atrophy Film Wins “Fan Favorite” at Neuro Film Festival 3400+ unique views as of 24-Mar-2013 – 2000+ unique views as of 08/2012

2012-03-02: Facebook Group Fights to Create Awareness for Rare Neurological Disease 9900+ unique views as of 24-Mar-2013 – 7500+ unique views as of 08/2012

2011-03-10: March is Multiple System Atrophy Awareness Month, Research and Education are Desperately Needed

2011-02-23: March is Multiple System Atrophy Awareness Month 900+ views

2010-03-11: Miracles for MSA Proclaims March as Multiple System Atrophy Awareness Month

CHAT ROOMS – Yahoo:

Drop by the MSA chat room weeknights at 8PM Eastern and Sundays at 6:30PM Eastern… or anytime.

OTHER GROUPS – Yahoo:

shydrager Multiple System Atrophy online support Group (Worldwide)

Multiple System Atrophy Newsletter

Multiple System Atrophy

 

OTHER GROUPS – Facebook:

Come Cook with MSA (Multiple System Atrophy) Families

 

 

 

 

*** More links coming soon – please check back

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