Our campaign is now complete. 142 supporters helped us raise £8,085.00
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The Multiple System Atrophy (MSA) Trust was established in 1997 by our founder, Sarah Matheson, who was shocked by the lack of understanding and support for those living with MSA. Sarah took the initiative to provide what, in her experience, was missing for people with MSA, their families and carers: a safe space for peer support, understanding, and connection. And so, the first MSA Support Group was born.
Since then, we have expanded and developed our Support Groups. We now offer both digital and in-person meetings throughout the UK and Ireland, ensuring that all our members can access support in the way that best suits them. Additionally, we host regular coffee mornings, carers' support groups and new member webinars.
In 2024 we will have run 165 meetings which equals 14 groups a month or 3 groups a week.
These groups all share the same core purpose: to reduce the isolation faced by those affected by MSA, provide a space for shared knowledge and understanding and ensure members have regular access to an MSA Health Care Specialist.
With the help of our community, we have expanded our services, but we have never forgotten how important a supportive, shared space can be for all those affected by MSA.
We receive so much information here [Support Groups], that we have never been told by the Neurologists or OT's etc. Really helpful guidance from other people and their family. We feel we have somewhere to turn to where people actually listen to my husband. It's the only place where this condition and its continual onslaught is really understood. Quite frankly we would be lost without you. Put simply it's a lifeline…”
Gives us a chance to ask specific questions and get specific information about the disease. We have made friends who we see every few months.
Each year on average, we host 73 face-to-face regional groups and 92 digital Support Groups and webinars. Additionally, our MSA HealthUnlocked online forum is actively used by hundreds of families, providing a platform to share practical tips and offer mutual support for those affected by MSA.
It is good to meet people in the same situation. Once going into the group, you know everyone is in the same situation even if at different stages. They understand.
The MSA staff have been very supportive and helpful. It is good to see that there are others with MSA as you never come across anyone in daily life.
Multiple System Atrophy is a rare and devastating condition, and we understand how vital it is to bring people together. To support this, we hold some form of Support Group every other working day, which requires substantial organisation and staff resources.
We have found out how other people manage, about useful products, all sorts of helpful tips are exchanged, and it is lovely to meet the specialist nurse in person so that she gets to know you. It’s very sociable.
Being able to talk with others caring for loved ones with the same condition is very reassuring. It’s helpful to share experiences.
This Christmas, we are asking for your support to help us continue providing this crucial lifeline for our MSA community.
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