MULTIPLE SYSTEM ATROPHY UNITED
UNITED, WE CAN AND WILL DEFEAT MSA FOREVER!
MANY LIVES, ONE HOPE
- RESEARCH
- EDUCATION
- SUPPORT
- ADVOCACY
What is
Multiple System Atrophy?
MSA is a rare, fast and fatal brain disease. MSA impairs the systems that regulate blood pressure, heart rate and the bladder – many of the basic bodily functions that people take for granted every day. People with MSA suffer from dangerously low blood pressure, speech and swallowing difficulties, sleep disturbances, breathing problems, rigidity and tremors. The life expectancy is typically 5 to 10 years. Patients with advanced MSA often become bed-bound, unable to speak and immobile. At present, there is no cure for MSA, no genetic tests to detect it, no therapy to slow it and very few treatments to manage its debilitating effects.
MULTIPLE SYSTEM ATROPHY UNITED INTERNATIONAL
Defeat MSA Alliance (USA)
Defeat MSA Alliance is a US based 501(c)(3) charity that aspires to balance efforts to support patients, educate medical professionals, raise public awareness and nurture promising research.
Defeat Multiple System Atrophy – Vaincre L’Atrophie Multisystématisée (Canada)
Defeat MSA Canada is a Canadian registered organization that aspires to balance efforts to support patients, educate medical professionals, raise public awareness and nurture promising research.
Defeat MSA Australia & New Zealand (Defeat MSA Down Under)
Defeat MSA Down Under is a registered charity serving the needs of those affected by Multiple System Atrophy in Australia and New Zealand. It aspires to balance patient support, medical education, public awareness and promising research.
Combattiamo l’Atrofia Multisistemica (MSA-Italia)
La prima organizzazione Italiana a sostegno dei malati e dei caregivers che convivono con l’Atrofia Multisistemica. Il nostro scopo è fornire supporto ed informazioni a coloro che si trovano ad affrontare questa poco conosciuta patologia neurodegenerativa.
The first Italian organization to support patients and their caregivers Multiple System Atrophy.
Defeat MSA Awareness Shoe
The Defeat MSA Awareness Shoe ™ has traveled to dozens of countries, rubbed shoulders with some notable people and visited many famous landmarks. The MSA Awareness Shoe is a tool for spreading awareness, increasing support for patients and their caregivers and fighting MSA by raising vital research dollars. The Shoe’s journey is undertaken in memory of all those that have died due to MSA and in support of all those presently fighting Multiple System Atrophy!
La Asociacion Síndrome Shy-Drager
La Asociación Española Síndrome Shy Drager – Atrofia Multisistémica (ASYD) es una asociación que atiende a afectados por AMS y sus familiares- Entre nuestros objetivos principales pretendemos dar visibilidad a la enfermedad, promover la investigación y aportar los recursos disponibles para la mejora de la calidad de vida de estos pacientes.
The Association for Shy-Drager Syndrome cares for those affected by Multiple System Atrophy (AMS/MSA) and their families. Our intention is to give visibility, promote research and provide available resources to improve the quality of life for AMS/MSA patients.
“A seed hidden in the heart of an apple is an orchard invisible.”
MSA UNITED
PATIENT
ADVOCACY COUNCIL
The mission of the MSA Patient Advocacy Council is to facilitate communication between stakeholders in the MSA community, creating a global platform for discussion, consensus building, and a vehicle for sharing experiences related to living with MSA.
Charlene McCabe Allemon
Michigan, USA
Joshua Lee Calvert
New South Wales, Australia
Rev’d Stephen Donald
Gisborne, New Zealand Grace Dunne
New York, USA
Miguel Ángel del Pino Esteban
Member, Patient Council (Asociacion Shy-Drager - Spain) Barbara Flanagan
Tennessee, USA Suzanne Keys
Christchurch, New Zealand
Kelly Murphy
Ontario, Canada Michael Smith
Texas, USA
Daniel Tenev
Milan, Italy Anthony Tricoli
Tennessee, USA Beverly Wilson
Michigan, USA
Marta Behrendt
Marburg, Germany Veronica Whitelock
Johannesburg, South Africa
Valerie Garneau
Quebec, CanadaFiles and Resources
Find a Doctor
Find a Support Group
- in Spain
- in Italy
- in USA
- in Canada
- in Australia
- in New Zealand
- Online Support Groups
About Our Consortium
- PRESS RELEASE (ENGLISH)
- PRESS RELEASE (ITALIAN)
- PRESS RELEASE (SPANISH)
- PRESS RELEASE (FRENCH)
- PRESS RELEASE (PORTUGUESE)
Volunteer to help
- English
- French
- Spanish
- Italian
GLOBAL SCIENCE AND MEDICAL RESEARCH ADVISORS
Affiliated Charities
Gregory W. Auner, PhD
Scientific Research Advisory Board (Defeat MSA Alliance - USA)
Pratik D. Bhattacharya, MD, MPH
Scientific and Medical Research Advisory Boards (MSA United - India/United States)
Alessio Di Fonzo, MD PhD
Medical Research, Combattiamo MSA Italia
Ziv Gan-Or, MD, PhD
Scientific Research Advisory Board (MSA United - Israel/Canada)
Edwin B. George II, MD, PhD
Chair, Medical Research Advisory Board (MSA United - United States)
Glenda Halliday, PhD
Scientific Research Advisory Board (MSA AU-NZ/Defeat MSA Down Under)
Henry Houlden, MD, PhD
Medical Research Advisory Board (MSA United - United Kingdom)
Jeffrey Kordower, PhD
Scientific Research Advisory Board (Defeat MSA Alliance - United States)
Anthony E. Lang, OC, MD, FRCPC, FAAN, FCAHS
Co-Chair, Medical Research Advisory Board (MSA United - Canada)
Giulia Lazzeri, MD
Medical Research Advisory Board (Combattiamo MSA Italia)
Peter A. LeWitt, MD, MMedSc
Medical Research Advisory Board (Defeat MSA Alliance - United States)
Wouter Peelaerts, PhD
Chair, Scientific Research Advisory Board (MSA United - Belgium)
Alexandra Pérez Soriano, MD
Scientific Research Advisory Board (Asociacion Shy-Drager - Spain)
Michael G. Schlossmacher, MD, DABPN, FRCPC
Scientific Research Advisory Board (MSA United - Canada)
Oybek E. Turgunkhujaev, MD
Medical Research Advisory Board (MSA United - Uzbekistan/Russia)
Gary Zammit, PhD
Scientific Research Advisory Board (Defeat MSA Alliance - USA)
Maria Jose Martí, MD, PhD
Medical Research Advisory Board (Asociacion Shy-Drager - Spain)MULTIPLE SYSTEM ATROPHY NEWS
Kommunikation von Biohaven in Deutscher Sprache:
Proaktive Fragen: können online veröffentlicht werden 1) Kann ich trotzdem an der Studie teilnehmen? Die Aufnahme in die Phase-III-Studie wurde im Juli 2020 abgeschlossen. 2) Wann werden die Ergebnisse der Phase-III-Studie voraussichtlich bekannt sein? Biohaven...
Comunicacion de Biohaven Pharmaceuticals en Idioma Espanol
Preguntas proactivas: se pueden publicar en línea ¿Puedo seguir uniéndome al ensayo? La inscripción para el estudio en fase III cerró en julio de 2020. ¿Cuándo se espera que...
Communciation de Biohaven en Langue Francaise
Questions proactives : peuvent être publiées en ligne 1) Puis-je quand même participer à l’essai? L’inscription à l’étude de phase 3 a pris fin en juillet 2020. 2) Quand pourrions-nous connaître les résultats de l’étude de phase 3? Biohaven s’attend à ce que les...
Comunicazione in Lingua Italiana da Biohaven
Domande proattive: possono essere pubblicate online Posso ancora partecipare alla sperimentazione?L’arruolamento per lo studio di fase 3 è stato chiuso a luglio 2020.Quando ci si aspetta di conoscere i risultati dello studio di fase 3?L’aspettativa di Biohaven è che i...
*NEW* RESEARCH UPDATE FROM BIOHAVEN RE: VERDIPERSTAT (BHV-3241)
Timeline: International Phase 3 Clinical Trial of Verdiperstat in Multiple System Atrophy "Top line results from the study are expected to be available in 3rd Quarter of 2021 and will help to characterize the potential benefits and risks of Verdiperstat in MSA. After...
SAVE THE DATE: MSA Annual Virtual Conference, October 1-3, 2021
Defeat MSA Alliance Board of Directors and affiliated charities in the MSA United Consortium are pleased to announce the second Annual All-Community MSA Conference to be held October 1-3, 2021. This year's conference will include several exciting educational...
MSA AWARENESS MONTH ACTIVITIES
A Few of Activities For MSA Awareness Month... 1) EAT CAKE. GIVE HOPE. DEFEAT MSA. Join Annual Cake 4 A Cure Campaign! Read About an Amazing and Successful Campaign: Cake4aCure.org Also, the Facebook page for more details: https://www.facebook.com/Cake4aCure 2)...
BREAKING NEWS – MSA GLOBAL VIRTUAL CONFERENCE
Defeat MSA Alliance and the MSA United International Consortium charities are excited to announce the world’s first MSA virtual conference! The Global MSA Virtual Support Symposium is Free for all and will take place on Saturday, the 19th of September, 2020. We...
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MSA United International
29924 Jefferson Avenue
Saint Clair Shores, Michigan 48082
USA