The MSA Trust is the UK's leading charity dedicated to multiple system atrophy (MSA), a rare and rapidly progressive neurodegenerative disorder[1]. Founded in 1969 as the MSA Association, the organization has been supporting people with MSA and funding research into the condition for over 55 years. The Trust serves as the primary source of information, support, and advocacy for the MSA community in the United Kingdom and internationally.
MSA is characterized by a combination of symptoms affecting autonomic functions (blood pressure, bladder, digestion), movement (Parkinsonism), and coordination (ataxia). The disease involves degeneration of multiple brain systems, including the basal ganglia, cerebellum, and autonomic nervous system[2]. With a prevalence of approximately 1.9-4.9 per 100,000 individuals, MSA represents one of the rarer neurodegenerative movement disorders, yet its impact on patients and families is devastating due to the rapid progression and limited treatment options[3].
The MSA Trust is committed to:
The Trust's current strategic plan focuses on four key areas:
MSA is classified into three main variants[4]:
The clinical presentation of MSA involves multiple system involvement[5]:
Autonomic Dysfunction:
Motor Symptoms:
Cerebellar Signs:
Other Features:
MSA is classified as an α-synucleinopathy, sharing pathological features with Parkinson's disease but with distinct characteristics[6]:
Glial Cytoplasmic Inclusions (GCIs): The hallmark pathological feature is the presence of filamentous cytoplasmic inclusions in oligodendrocytes, composed primarily of misfolded α-synuclein
Neuronal Loss: Severe neuronal loss in the striatum, substantia nigra, pontine nuclei, inferior olivary nuclei, and cerebellar Purkinje cells
Myelin Degeneration: Secondary myelin degeneration resulting from oligodendrocyte dysfunction
The MSA Trust funds research across multiple domains[7]:
Understanding the role of alpha-synuclein in MSA pathology is central to the Trust's research strategy. Current projects include:
Early and accurate diagnosis remains a major challenge in MSA[@wang2024]. The Trust funds research into:
With no currently approved disease-modifying therapies[8], the Trust prioritizes research into:
The Trust supports and facilitates clinical trials through:
Project Grants:
Fellowships:
Pilot Grants:
The MSA Trust collaborates with:
MSA is characterized by a distinctive neuropathology:
The hallmark of MSA is abnormal alpha-synuclein aggregation in oligodendrocytes [3:1]:
Current research focuses on [12]:
The Trust supports numerous clinical trials:
Recent genetic studies have identified risk factors [7:1]:
Autonomic failure is a core feature of MSA [5:1]:
MSA progresses rapidly compared to PD [15]:
The Trust employs specialist MSA nurses who provide[16]:
Clinical Support:
Emotional Support:
The MSA Trust works to:
While no disease-modifying therapy exists, current management includes[@schmidt2024]:
Symptomatic Treatments:
Supportive Care:
The Trust recommends regular monitoring of:
The MSA Trust works to influence policy through:
Healthcare Policy:
Research Funding:
Public Awareness:
Healthcare Professional Education:
| Year | Milestone |
|---|---|
| 1969 | Founded as MSA Association (multiple system atrophy Association) |
| 1975 | First research grant awarded |
| 1985 | Established telephone helpline |
| 1990 | Published first comprehensive guide for patients |
| 2000 | Launched specialist nurse program |
| 2005 | First international research collaboration |
| 2014 | Rebranded as MSA Trust |
| 2018 | Launched online support community |
| 2020 | Published new research strategy |
| 2022 | Expanded nurse team to national coverage |
| 2023 | Initiated major biomarker research program |
The MSA Trust relies on:
| Year | Research Funding |
|---|---|
| 2020 | £420,000 |
| 2021 | £580,000 |
| 2022 | £650,000 |
| 2023 | £720,000 |
| 2024 | £750,000 (projected) |
The Trust coordinates a national research network:
The Trust collaborates globally:
Fanciulli A, Wenning GK. Multiple system atrophy. N Engl J Med. 2023. ↩︎
Koga S, et al. When does MSA appear? Age at symptom onset. Neurology. 2020. ↩︎ ↩︎
Wenning GK, et al. Multiple system atrophy: current understanding and future directions. Nat Rev Neurol. 2020. ↩︎
Fanciulli A, et al. Multiple system atrophy: autonomic dysfunction and cognitive impairment. Lancet Neurol. 2019. ↩︎ ↩︎
Jellinger KA, et al. Alpha-synuclein pathology in MSA. J Neuropathol Exp Neurol. 2021. ↩︎
Sanchez-Mendoza EH, et al. Genome sequence analyses identify novel risk loci for multiple system atrophy. Nat Genet. 2023. ↩︎ ↩︎
Perez-Soriano A, et al. High-dose ubiquinol supplementation in multiple-system atrophy: a multicentre, randomised, double-blinded, placebo-controlled phase 2 trial. Lancet Neurol. 2023. ↩︎ ↩︎
Kimbrough DJ, et al. Oligodendroglial dysfunction in MSA. Nat Neurosci. 2023. ↩︎
Valera E, et al. Alpha-synuclein strains in MSA. Acta Neuropathol Commun. 2022. ↩︎
Krismer F, et al. Neuropathology of multiple system atrophy. Acta Neuropathol. 2022. ↩︎
Ippolito G, et al. Neuroimaging biomarkers in MSA. Neurology. 2022. ↩︎
Calandra L, et al. Autonomic dysfunction in MSA. Clin Auton Res. 2023. ↩︎
Oriol R, et al. Clinical phenotype of MSA-C. Mov Disord. 2021. ↩︎
Muller J, et al. Disease progression in MSA. Neurology. 2023. ↩︎