PATIENT
PROGRAMS

GLOBAL
ONLINE SUPPORT HUB

GLOBAL ONLINE SUPPORT HUB (GOSH), a new free video-chat platform for patients with neurological diseases. The Global Hub is thought to be the first independent video chat platform designed for people with brain diseases.

The HUB includes a web based portal in addition to free downloadable Apple and Android apps that enable mobility limited patients to privately connect with others, in disease-specific patient groups.

The HUB will help patient communities, throughout the world, regardless of the neurological condition, to establish support groups with others in a convenient and secure way. The only requirements for adult patient users will be internet capability, a computer or mobile device and a group moderator who is trained in the basic functions of the hub.

Defeat MSA would like to thank the following collaborators for their efforts in the development of this invaluable patient resource: our digital hub partner, Prologic Technologies, our WebRTC partner, TokBox Inc. and our beta testing company, Test.io. We would also like to thank the following individuals for their tireless efforts and encouragement: Mike Smith (Lubbock, Texas), Pam Smith Howells (Wasilla, Alaska), Philip Fortier (Detroit, Michigan) and Dr. Pratik Bhattacharya (Detroit, Michigan).

The Hub was inspired by the wisdom and longtime support of Charlene Hurley Soleau (RIP), Defeat MSA’s Patient Advocate and former Board Member, who passed away in February of 2018. This Hub is dedicated to her. She lives forever in our hearts. May she soar with the angels!

The hub is an invaluable tool to help patients and caregivers maintain their independence while combating the usual feelings of isolation, that come with a diagnosis.

 Dr. Pratik Bhattacharya, Defeat MSA Research Board

Now, for the first time, we have a dedicated way to connect those who are facing devastating brain diseases, from Detroit to Yellowknife, Limerick to Nairobi, Manila to Rio and everywhere in between.

 Ms. Elena Fracassa, Defeat MSA Board

JOIN NOW, Visit www.BrainPatient.org

Or DOWNLOAD:

Global Online Support Hub in the Apple App Store or the Google Play Store.

Learn About Being A Hub Moderator

Please complete this form if you wish to become a volunteer Hub Moderator on the Global Online Patient Support Hub (www.BrainPatient.org). We are grateful for your help!

MSA
LOANER CLOSET PROGRAM

MSA’s debilitating nature often prevents patients from doing basic, day-to-day activities. Defeat MSA’s Loaner Closet Program, the only program of its kind for people with MSA in North America, is designed to give MSA patients the durable medical equipment they need to help them deal with the challenges of living with MSA. Although other MSA charities have recognized the value of the program, so far, only Defeat MSA has committed itself to funding and developing the program. We need your help in developing this program further.

Please consider a donation earmarked for the loaner closet. Help us make this program a success!

Below is a list of the equipment that we have been able to acquire or help facilitate an equipment loan to a needy patient:

  • Motorized Reclining Wheelchairs
  • Manual Reclining Wheelchairs
  • Hospital Chairs
  • Air Pressured Mattresses
  • Assistive Communication Devices
  • Cough Assist Machines
  • CPAP Machines

You can also connect directly to other families and learn more about he program by joining Defeat MSA’s Loaner Closet Program Group on Facebook.

If you wish to donate any item(s) – please send us a message via our Facebook group or email us at: loanercloset@defeatmsa.orgEquipment donation receipts are available upon request.

If you are a MSA patient and wish to receive an item from our loaner closet program – Please download and complete both of the forms below and mail them to Defeat MSA via the postal address below.

 

Defeat MSA 
29924 Jefferson Avenue 
Saint Clair Shores, Michigan 48082

We cannot do this without your help!  Please consider a donation directed to this valuable program that benefits people that are suffering so much from Multiple System Atrophy!  Any amount, large or small helps.

FACEBOOK
ONLINE GROUPS

https://www.facebook.com/groups/MSAtreatments/

(Defeat MSA Global – MSA Related Treatments, Research & News)

 

http://www.facebook.com/groups/MSAgenetics/

(MSA Research Into Genetics Question Discussion)

 

https://www.facebook.com/groups/MSA.Forever.Friends/

(MSA Forever Friends)

 

https://www.facebook.com/groups/MSApatientLoaners/

(Defeat MSA Medical Equipment Loaner Closet Program Group)

 

https://www.facebook.com/groups/DefeatMSAfamily/

(Defeat MSA Family Friends & Volunteers)

 

https://www.facebook.com/groups/MSAbrothersandsisters/

(Defeat MSA Brothers and Sisters Group)

 

https://www.facebook.com/groups/MSA.Youngins/

(Defeat MSA Young Onset)

https://www.facebook.com/groups/defeatmsalgbt/

(LGBTQ – Defeat Multiple System Atrophy Alliance)

 

https://www.facebook.com/groups/KickMSA/

(Kick MSA To Raise Awareness)

 

https://www.facebook.com/groups/atrofiamultisistemica/

(Atrofia Multisistemica – Spanish Speaking MSA Central & South America Group)

 

https://www.facebook.com/groups/AngelsMSA/

(MSA Angels, Prayers & Spirituality)

 

https://www.facebook.com/groups/SupportMSA/

(Support Cause – Defeat MSA)

 

https://www.facebook.com/groups/MSAunitedindia/

(MSA South Asian Greater India Region)

 

https://www.facebook.com/groups/NordicStates/

(Nordic Region MSA)

 

https://www.facebook.com/groups/MSACentralEurope/

(MSA Central Europe)

 

https://www.facebook.com/groups/763513260457173/

(MSA Awareness Bracelets By Kym)

 

https://www.facebook.com/groups/MSAawarenessTourUK/

(Defeat MSA Awareness Shoe Tour – UK & Irealand)

 

https://www.facebook.com/groups/MSAawarenessTourOZ/

(Defeat MSA Awareness Shoe Tour – Australia & New Zealand)

 

 

DEFEAT MSA CANADA GROUPS:

 

https://www.facebook.com/groups/MSA.AMS.Canada/

(Defeat MSA/AMS Canada National)

 

https://www.facebook.com/groups/MSACanadian.prairies/

(MSA Canada – The Prairies)

 

https://www.facebook.com/groups/MSA.Canada.BC/

(MSA Canada – British Columbia)

 

https://www.facebook.com/groups/MSA.Canada.territories/

(MSA Canada – The Territories & Alaska)

 

https://www.facebook.com/groups/MSA.Atlantic.Provinces/

(MSA Canada – Atlantic Provinces)

 

https://www.facebook.com/groups/280874549302384/?ref=share

(AMS/MSA Canada – Quebec)

 

 

CLOSED/SECRET GLOBAL DEFEAT MSA ALLIANCE GROUPS:

(You must be a friend of one of the group admins to join one of groups below)

 

MSA – A Caregivers Journey

(contact Defeat MSA for admission: director@defeatmsa.org)

 

MSA Patient – Life Affirmations 

(contact Defeat MSA for admission: director@defeatmsa.org)

 

MSA Clinical Trials 

(contact Defeat MSA for admission: director@defeatmsa.org)

 

 

DEFEAT MSA ALLIANCE PAGES:

 

https://www.facebook.com/DefeatMSA/

(Defeat MSA – USA Page)

 

https://www.facebook.com/MovementDisorderMilestones/

(Milestones for MSA Page)

 

https://www.facebook.com/MSAshoe/

(Where is the MSA Awareness Shoe?)

 

https://www.facebook.com/Memes4MSA/

(Memes & Graphics Related to MSA)

 

https://www.facebook.com/defeatmsaunited/

(Defeat MSA United Alliance Page)

 

https://www.facebook.com/msaawarenessmonth/

(MSA Awareness Month Group)

 

https://www.facebook.com/NeurologyByDoctorB/

(Neurology By Doctor B Page)

 

https://www.facebook.com/defeatmsacanada/

(Defeat Multiple System Atrophy Canada)

 

https://www.facebook.com/laughterismed/

(Laughter is the Best Medicine)

 

https://www.facebook.com/EatCake4MSA/

(Annual Eat Cake 2 Defeat MSA Campaign)

 

LOOKING FOR OTHER WAYS TO GET INVOLVED?

JOIN THE MOVEMENT TO #DEFEATMSA

 

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