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Sally's story | The Big Give Christmas Challenge 2023


Meet Sally, one of our Senior Advocacy & Support Officers. She has facilitated and joined many community events and treasures the time spent together and being able to connect face to face with our members.

Seeing everyone get involved, create new friendships and support each other, is what matters most to her.

MPS Society community events have different meanings to different people. For some, it is having the opportunity to meet up with old friends.

Our members and their families forge strong, meaningful and lasting relationships, initiated and brought together by a rare disease diagnosis, developing to provide mutual support and friendships.

It is such a great way to meet at a gathering where, even if only for a brief moment, fun, laughter and a bit of adventure can be had amongst those who understand.

For others, our events are often the first opportunity to get together with similar families living with a rare disease. However, it can be nerve-wracking to meet people from the rare disease community for the first time, especially after a recent diagnosis.

A fun social event can take the focus off the many health and medical issues associated with these conditions and can provide much needed downtime and help ease new families into the community.

We aim for MPS Society events to be accessible to all our members rather than just some, which is why they are heavily subsidised. For example, days out in theme parks can be extremely expensive, especially considering entry and meals for the whole family. We work hard to make our events available to our whole community. Of course, serving the entire UK means that no event is local to most members; therefore, travel is a necessity and an added expense. Also, for some people it is not possible to go on a long day journey, due to their medical or health needs. This summer, we endeavoured to address this issue by providing an overnight stay at Drayton Manor Resort Theme Park, which allowed families to attend who would have not been able to do so before.

Another first this year was our “grown-up” Adult Social Weekend in Manchester. This was purely an overnight stay in a hotel with dinner and casual drinks. It was fantastic to see some of our adult members attend and everyone agreed that they would love to see more similar events. With your support, we hope to be able to continue this next year. Once again, it gave the opportunity for old friends to meet up, new friendships to be made and virtual friendships to become in-person friendships.

It was also really lovely to be able to cater for parts of our community where theme parks and suchlike are not really their thing!

Finally, we know the important part of our work is to provide advocacy and support for those who request help wherever this is needed. We can offer advise on disability benefits, education and work issues, as well as aid and adaptions, to name just a few. We also work with pharmaceutical companies to support trials, with government departments to drive treatments and we are heavily involved in research and development of treatments and therapies for rare disease patients.

Whilst all of the above are crucial and necessary, particularly in a world where the odds are stacked against people with disabilities and rare diseases, there needs to be some fun, some respite from the daily grind.

Social interactions and the chance to be part of a bigger community are crucial to avoid feeling isolated or alone and to have something to look forward to.

This is why our community events are so important for our members, their families and carers alike.

This Christmas help to create a community for people living with MPS, Fabry and related conditions. We want to raise £24,000 to fund bespoke events, so that we can continue to offer activities and get-togethers that are accessible and suitable for our whole community, where families can find support, understanding and strength among people in similar circumstances.

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.

Just visit between those dates to donate online.

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