To help you know where to turn to when seeking support we have our 'Where To Go For What' factsheet.
This factsheet provides an overview of some of the key services, support and equipment that may be useful to people affected by MSA.
You can find this factsheet along with all of our others by following this link - .uk/support-for-you/factsheets/
If you have any questions or would like more information please contact us at [email protected]
We continue our Free Will offer that allows you to create or update your Will with a local, qualified solicitor through our partnership with the National Free Wills Network.
The offer is open to all supporters of the MSA Trust and the Trust pays for the service. All we ask is that you might consider leaving a gift in your Will for MSA Trust’s future work. There’s no obligation to do so, but by leaving a gift to us, you can make a real difference for the MSA community and our research work.
.uk/get-involved/donate/leave-a-gift-in-your-will/i-dont-have-a-will-yet/
A team at the University of Hertfordshire wants to interview people with MSA and carers as part of a research study into Care and Support Provision for people with an Atypical Parkinsonian Syndrome.
If you live in England and want to take part you can contact them using the email or phone number on their flyer (in image).
#BetterSleepMonth A good night's sleep is vital, but getting one is not always simple - especially for people with MSA.
To help you understand the ways in which MSA can affect sleep, we created a factsheet on the topic- .uk/support-for-you/factsheets/
Our 'Sleep in MSA' factsheet looks at Rapid Eye Movement sleep disorder, Sleep Apnoea, Stridor, Nocturia, Restless Leg Syndrome, Insomnia, Daytime Sleepiness and Sleep Hygiene.
Support the MSA Trust every time you shop with Tesco or F&F at no extra cost to you!
We’re registered with easyfundraising, which means every eligible Tesco shop can help raise funds for us.
Every shop completed before 31st May 2026 gives us the chance to win a £1,000 funding boost! Plus, every first time Tesco shoppers in May will raise £3, and every additional shop raises 50p – no extra cost!
Sign up and support us here: .uk/support-a-good-cause/
International Nurse’s Day is a chance to recognise the skill, dedication and compassion of nurses everywhere, and the difference they make every day to individuals, families and communities.
We are proud to celebrate our MSA Nurse Specialists whose expertise and commitment make a real difference to people living with MSA.
Read our latest blog here-
.uk/blog/international-nurses-day-2026/
This Mental Health Awareness Week is all about taking positive action to support good mental health. Whether big or small, taking action to support yourself or someone you care about can make a big difference.
Taking on a challenge – a run, walk, hike, cycle ride, or swim – can also support your mental wellbeing while raising awareness and vital funds for people affected by MSA.
.uk/get-involved/events/
This Mental Health Awareness Week is all about taking action to support good mental health. Whether big or small, taking action to support yourself or someone you care about can make a big difference.
Our Emotional Impact page can help by suggesting ways to support your emotional wellbeing, alongside signposting to professional help that is available - .uk/support/living-with-msa/emotional-impact-of-msa/
We have also written about what you can do to support a friend with MSA, with suggestions from the MSA community. You can find this on page 18 in MSA News Issue 74 - .uk/support/support-services/msa-news-magazine/msa-news-issue-74/
CONCORD2 (COordiNated Care Of Rare Diseases 2) is a research study that aims to examine the best approaches to care coordination for people affected by rare conditions, and develop recommendations about how care should be coordinated for these individuals.
If you would like to take part in this survey then please click on one of the links below, depending on whether you have a rare or undiagnosed condition, or are the parent or carer of a patient with a rare or undiagnosed condition:
If you are 18 or over and with a rare or undiagnosed condition and would like to take part in the survey, please click here - /jfe/form/SV_09EGCdSmaBU4RTM
If you are the parent or carer of a patient with a rare or undiagnosed condition and would like to take part in the survey, please click here - /jfe/form/SV_d6akhFMox1Udh4i
The deadline to fill in the survey is the 29th May. You do not have to take part in the survey if you prefer not to; taking part in this survey is voluntary
Join us on Saturday the 4th of July, at Sarah's Wood, for our annual Summer Social event.
Our Summer Social is a wonderful opportunity for our community to come together, support the Trust, and meet others affected by MSA. It’s also a chance to view the newly ordered engraved bricks added to the Path to a Cure and enjoy afternoon tea with staff, volunteers and other families affected by MSA - .uk/get-involved/events/sarahs-wood/summer-social/.
The Department of Work and Pensions (DWP) has announced a reassessment of some claims of Carers Allowance. It relates to where there has been an earnings-related Carer's Allowance overpayment between 2015 and September 2025. It applies to claims where the department wrongly calculated claimants’ fluctuating earnings. Some people may have previously been asked to repay overpaid Carers Allowance. The DWP exercise will assess if people are due a refund of that overpayment. Claimants with an overpayment will not see their balance increase as a result of the DWP exercise.
If you have received a letter from the DWP about this and need support, please contact [email protected].
Carers UK has a useful Carers Allowance Overpayments Information Support Hub with more details, together with frequently asked questions - /help-and-advice/financial-support/carers-allowance/support-with-overpayments-carers-allowance/carers-allowance-overpayments-support-hub/ “
Thank you so much to Sarah and Ellen, for recently completing the London Landmarks Half Marathon. They've raised over £2,000 in memory of their Gran.
"We lost Gran to Multiple System Atrophy. Our Gran was hilarious, silly, our biggest cheerleader and the most optimistic person you could hope to meet. She never minded being the brunt of the jokes and was always a soft touch for us growing up. Even 11 years after losing her, we all still miss her, particularly in the moments we know she would be most proud. We still often wish we could call her for a chat and tell her what we've been up to.
MSA is a cruel, progressive disease with no cure. Over several years, we saw it rob Gran of her quality of life, but never break her spirit. Until the end she was utterly devoted to us and her family and was delighted to see us. So we will be running to fund research into the cause and cure for MSA, as well as for support for families like ours. And most of all, Gran we're doing this for you."
