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 – 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 group, only members may post and search the archives.   There are over 130,000 past messages which can be searched to find mention of symptoms, medications and equipment etc.  (1700+ members – Admin: Pam Bower, Vera James, Suzanne Burke, Debbie White, John Standley, Robin Riddle)

Multiple System Atrophy (MSA) - Open discussion group with worldwide membership.  (2000+ members – Admin:  Stephanie Miranda Willcocks and Ruth Miranda Hardy)

MSA Buddies -  Closed group with many MSA patients. 300+ members (Admin: Todd Cowsky)

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

MSA Non-Profits (USA):

MSA Coalition – First US Non-Profit for MSA established in 1989  2000+ fans

Contact:

Vera James vjames@msacoalition.org
Judy Biedenharn jbiedenharn@msacoalition.org
Don Crouse dcrouse@msacoalition.org
Carol Langer clanger@msacoalition.org
Pam Bower pbower@msacoalition.org

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

Cure MSA – Kathy Shih Memorial Foundation 1000+ fans (Contact: Lily Shih)

MSA NJ – New Jersey based group offering support to the tri-state area 300+ fans  (Contact: Cynthia Roemer, Kym Roemer)

Joseph G. Fortier Foundation for MSA (Contact: Philip Fortier)

National Ataxia Foundation 2000+ fans (Contact: Michael Parent)

CurePSP 3000+ fans (Contact: Richard Gordan Zyne or 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) – Closed – 100+ members

MSA Middle Atlantic states USA (NY-NJ-PA) – Closed – 100+ members

MSA Northeast Central states USA (IN-IL-MI-WI-OH) – Closed -150+ members

MSA Northwest Central states USA (IA-KS-MN-MO-ND-SD-NE) – Closed – 50+ members

MSA South Atlantic states USA (DE-DC-FL-GA-MD-NC-SC-VA-WV) – Closed – 150+ members

MSA Southeast Central states USA (AL-KY-MS-TN) – Closed – 50+ members

MSA Southwest Central states USA (TX-OK-LA-AR) – Closed – 100+ members

MSA Mountain states USA (AZ-CO-ID-NM-MT-UT-NV-WY) – Closed – 50+ members

MSA Pacific states USA (CA-OR-WA-HI-AK) – Closed – 150+ members

AWARENESS RAISING GROUPS:

Miracles for MSA -  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. (3700+ members – 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) (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 3) (Admin: Rita Schouppe-Moons – Belgium, Janet Saad – South Africa, Pam Bower – Canada) Open group

Where is Tim’s Shoe????? - 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.  (2100+ members)  (Admin: Darlene Ogden and Gretchen Turner) See  the video: “Raising awareness for a rare disease through the simplicity of a shoe”

GROUPS FOCUSED ON RESEARCH DISCUSSION:

Multiple System Atrophy News – This group is focused on discussions of current MSA Research news.  Several MSA researchers are members of this group.  (Open – 900+ members – Admin: Pam Bower  – If you have research expertise and would like to contribute to this discussion group please contact pbower@accesscable.net)

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

SMALLER GROUPS:

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 System Atrophy – Open – 150+ members (Admin: Jeffrey Peltz)

Multiple Systems Atrophy – 100+ members (Admin: Jeannie Gibson)

MSA One Day At A Time – Brenda’s Journey 100+ members (Admin: 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)

MSA – A Caregiver’s Journey – This group is for caregiver’s only, by invitation.  To request an invitation please contact Kym Crowe kymcrowe39@yahoo.com

MSA – A Patient’s Journey – This group is for patients only, by invitation.  To request an invitation please contact Vera James fvjames@aol.com or Pam Bower pam.bower@msaawareness.org

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)

**NEW** 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

Life with MSA (Multiple System Atrophy) – (Admin: Lori Jakeway)

 

 

 

*** More links coming soon – please check back

Comments are closed.