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Oke's story | The Big Give Christmas Challenge 2023


For the first time this year, we organised an Independent Adult Social Weekend at a hotel in Manchester as part of the community events we offer to our members.

This was a great opportunity to unwind from everyday life and to connect with other people living in similar circumstances. Together, we enjoyed a relaxed dinner, had some drinks at the bar and chatted for hours before settling down for the night. Our Support and Advocacy Team say:

The event came about because of discussions with adult members asking them what they might like. They asked for something not too complicated, just meeting people having a drink and something to eat. Some have had contact previously through social media but have not met face to face. So an option to see each other in real life was appealing. By offering it for free, it meant that those who might not be able to attend a paid event, could still come and feel part of a community.

Hear from Oke, one of our members who joined the Adult Social Weekend:

Hi, I am Oke and I have Fabry disease. I joined the MPS Society over a year ago when I received my diagnosis and have really appreciated their support.

One of the special things that I have been able to benefit from was the weekend for adults in Manchester which was fantastic and very informative.

It was free to attend which was great and meant that it was available to everyone, no matter what their circumstances.

Whilst there, I met some lovely people and had interactions with people with other experiences similar to mine. The trip made a difference to me as it made me understand more about the MPS Society and how they can help to support me.

I met Sally who was very helpful and gave me lots of advice and I met a few others who made me feel welcome.

It was a real eye opener to attend the event as so many people there were going through the same sorts of things as me and this was helpful to talk to them and find out more about them and their lives, as well as to meet Sally.

I would love to go again as it was a good place to be.

Please consider making a donation during the Big Give Christmas Challenge, so that Sally and the MPS Society can organise more get togethers like these. This year, they are hoping to raise £24,000 to pay for events like the adult weekend so that anyone with MPS, Fabry or other related condition will have the chance to be part of a community.

All you need to do is make a donation between 12 midday on Tuesday 28 November and 12 midday on Tuesday 5 December. During this time donations will be matched pound-for-pound at no extra cost to you meaning your donation will be worth twice as much to us and the people we support.

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