Review| Volume 211, P39-42, May 2018

Download started.


Multiple system atrophy: Building a global community – 30years of advocacy efforts

Published:December 16, 2017DOI:


      • Multiple system atrophy (MSA) is a rare, progressive neurodegenerative disease with no available disease modifying treatment.
      • Awareness by medical practitioners about multiple system atrophy as a diagnostic possibility is severely lacking.
      • Lack of awareness of the disease has amplified the unmet needs of multiple system atrophy patients and other stakeholders.
      • Since the 1980’s a growing movement to highlight the plight of those affected by multiple system atrophy has emerged.
      • Stakeholders are uniting to attack MSA from a global perspective in the hopes of improving outcomes for future patients.


      Multiple system atrophy (MSA) is a rare, progressive and ultimately fatal neurodegenerative disease with no known cause and no available disease modifying treatment. Known previously by various names including Shy-Drager Syndrome, olivopontocerebellar atrophy (OPCA) and striatonigral degeneration, MSA can be classified simultaneously as a movement disorder, an autonomic disorder, a cerebellar ataxia and an atypical parkinsonian disorder.
      Despite scholarly attempts to better describe the disease, awareness among medical practitioners about multiple system atrophy as a diagnostic possibility has been slow to catch on. As a result, patients often go undiagnosed for many years or are largely misdiagnosed as Parkinson's disease. The non-homogeneous clinical presentation of MSA and years of confusing nomenclature have all contributed to a lack of awareness of the disease among healthcare professionals as well as the public. This lack of awareness has amplified the unmet needs of MSA patients and other stakeholders.
      Since the 1980s there has been a growing advocacy effort directed at this rare disease from advocacy groups, grassroots supporters, healthcare professionals and research networks. These stakeholders are beginning to unite their efforts and attack the disease from a global perspective in the hopes of improving outcomes for MSA patients in the future.
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Autonomic Neuroscience: Basic and Clinical
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Fanciulli A.
        • Wenning G.K.
        Multiple-system atrophy.
        N. Engl. J. Med. 2015; 372: 249-263
        • Geser F.
        • Seppi K.
        • Stampfer-Kountchev M.
        The European Multiple System Atrophy-Study Group (EMSA-SG).
        J. Neural Transm. 2005; 112: 1677-1686
        • Gilman S.
        • May S.J.
        • Shults C.W.
        • et al.
        The North American multiple system atrophy study group.
        J. Neural Transm. 2005; 112: 1687-1694
        • Gilman S.
        • Wenning G.K.
        • Low P.A.
        • et al.
        Second consensus statement on the diagnosis of multiple system atrophy.
        Neurology. 2008; 71: 670-676
        • Krismer F.
        • Jellinger K.A.
        • Scholz S.W.
        • Seppi K.
        • Stefanova N.
        • Antonini A.
        • Poewe W.
        • Wenning G.K.
        Multiple system atrophy as emerging template for accelerated drug discovery in α-synucleinopathies.
        Parkinsonism Relat. Disord. 2014 Aug; 20: 793-799
        • Low P.
        • Robertson D.
        • Gilman S.
        • et al.
        Efficacy and safety of rifampicin for multiple system atrophy: a randomised, double-blind, placebo-controlled trial.
        Lancet Neurol. 2014 Mar; 13: 268-275
        • Norcliffe-Kaufmann J.
        • Palma A.J.
        • Krismer F.
        Multiple system atrophy: the case for an international collaborative effort.
        Clin. Auton. Res. 2015; 25: 81-83
        • Quinn N.
        Multiple system atrophy—the nature of the beast.
        J. Neurol. Neurosurg. Psychiatry. 1989; (1989 Jun): 78-89
        • Shy G.M.
        • Drager G.A.
        Neurological syndrome associated with orthostatic hypotension.
        Arch. Neurol. 1960; 2 (1960 May): 511-527
        • Spillantini M.G.
        • Crowther R.A.
        • Jakes R.
        • Cairns N.J.
        • Lantos P.L.
        • Goedert M.
        Filamentous alpha-synuclein inclusions link multiple system atrophy with Parkinson's disease and dementia with Lewy bodies.
        Neurosci. Lett. 1998; 251: 205-208
        • Walsh R.R.
        • Krismer F.
        • Galpern W.R.
        • Wenning G.K.
        • Low P.A.
        • Halliday G.
        • Koroshetz W.J.
        • Holton J.
        • Quinn N.P.
        • Rascol O.
        • Shaw L.M.
        • Eidelberg D.
        • Bower P.
        • Cummings J.L.
        • Abler V.
        • Biedenharn J.
        • Bitan G.
        • Brooks D.J.
        • Brundin P.
        • Fernandez H.
        • Fortier P.
        • Freeman R.
        • Gasser T.
        • Hewitt A.
        • Höglinger G.U.
        • Huentelman M.J.
        • Jensen P.H.
        • Jeromin A.
        • Kang U.J.
        • Kaufmann H.
        • Kellerman L.
        • Khurana V.
        • Klockgether T.
        • Kim W.S.
        • Langer C.
        • LeWitt P.
        • Masliah E.
        • Meissner W.
        • Melki R.
        • Ostrowitzki S.
        • Piantadosi S.
        • Poewe W.
        • Robertson D.
        • Roemer C.
        • Schenk D.
        • Schlossmacher M.
        • Schmahmann J.D.
        • Seppi K.
        • Shih L.
        • Siderowf A.
        • Stebbins G.T.
        • Stefanova N.
        • Tsuji S.
        • Sutton S.
        • Zhang J.
        Recommendations of the Global Multiple System Atrophy Research Roadmap Meeting.
        Neurology. 2017 Dec 13; ([Epub ahead of print] Review)
        • Wenning G.K.
        • Tison F.
        • Seppi K.
        • et al.
        Development and validation of the Unified Multiple System Atrophy Rating Scale (UMSARS).
        Mov. Disord. 2004; 19: 1391-1402
        • Wenning G.K.
        • Stefanova N.
        • Jellinger K.A.
        • Poewe W.
        • Schlossmacher M.G.
        Multiple system atrophy: a primary oligodendrogliopathy.
        Ann. Neurol. 2008; 64: 239-246
        • Wenning G.K.
        • Geser F.
        • Krismer F.
        • et al.
        The natural history of multiple system atrophy: a prospective European cohort study.
        Lancet Neurol. 2013 Mar; 12: 264-274

      Web references

        • American Autonomic Society
        History of AAS.
        • Facebook
        Miracles for MSA.
        (Facebook page)
        • H.Res.518 — 113th Congress
        • Multiple System Atrophy Coalition
        Blog: A Caregiver to MSA Caregivers.
        • Multiple System Atrophy Coalition
        The Multiple System Atrophy Coalition History.
        • Multiple System Atrophy Trust
        History: Our Founder, Sarah Matheson.
        • NVA
        Meer aandacht en middelen naar zeldzame ongeneeslijke ziekte MSA dankzij N-VA (More Attention and Resources for Rare Incurable MSA Disease Thanks to N-VA).
        • PRWEB
        Multiple System Atrophy Coalition to be Prime Sponsor of Major International Scientific Conference.
        • PRWEB
        The Multiple System Atrophy Coalition Honors 7th Annual International Multiple System Atrophy Awareness Month in March 2016.
        • PRWEB
        The Multiple System Atrophy Coalition Surpasses $1 Million Milestone in Research Funding.
        • Vanderbilt University Medical Center
        Shy-Drager Syndrome Support Group Listserver.
        • Wenning G.K.
        International Parkinson and Movement Disorder Society (MDS) Endorsed Multiple System Atrophy Study Group. Moving Along.
        (Volume 19 Issue 1 page 6)
        • Hollywood Republican
        The Endeavor to Bring Awareness to MSA.
        • Yahoo Groups
        Shy-Drager Multiple System Atrophy Support Group.