MSA Trust

Back to work – Musings of a CEO

Well, what a year MSA Trust have had. Our team expanded to 17 in total, part-time and full time staff all dedicated to supporting and enabling people with MSA and their families get the help and advice they need. My admiration for the work they do grows continuously; even after seven years as CEO, I am always surprised and delighted by the innovation and thinking of the whole team.

So what will this year hold?…. First, there is more research happening and a growing body of fantastic researchers are continuously thinking outside the box to bring about a breakthrough in Multiple System Atrophy. We had the publication last year of the revised criteria for diagnosing MSA and while it still has to be a clinical diagnosis, we are excited by the prospect of developing biomarkers to enable a diagnostic test for earlier identification of the disease. Earlier identification means more opportunities to interrupt, slow or ultimately stop the progression of the disease. This remains our Holy Grail.

It is good to see that there are some Phase three trials developing to hopefully bring about some disease modifying treatments that would give people some relief from some of the worst effects of MSA. We are engaged with pharmaceutical companies who are running these trials and throughout the year we will do our best to keep you updated. In the meantime, we continue to develop our series of informative webinars, write new factsheets, update our guides, run more Support Groups and hopefully ensure that no one has to face this MSA journey alone.

I look forward to summer (well, don’t we all) when the whole team will gather to agree on our next three year plan, based on the results of the MSA Needs Survey that many of you kindly completed for us last year. We are a service that continues to be driven by the needs of you, families, friends, carers and particularly those living with MSA.

I hope 2023 brings more hope, more joy and more love for everyone,

Happy New Year.

Karen Walker


Disclaimer: The views and opinions expressed in the blogs published on these pages are those of the authors and do not necessarily reflect the official policy or position of the MSA Trust.

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Andrea Chudley
Andrea Chudley
1 year ago

So grateful for everything you do.
How you do it with such a small team is testament to the dedication and professionalism of you all. Thank you.

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