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Together we can transform lives


We would love to know the overall step-count you have been putting in for the MPS Society this month. An incredible amount of half-marathons have been run and mountains conquered in order to raise awareness and vital funds. Thank you all, you have definitely left a trace with a lasting impact. Scroll down and read more about some of this month's inspirational fundraisers.

If you feel motivated but prefer a smaller challenge, discover more about our easy ways to fundraise.

Cheshire Young Farmers

We would like to send an enormous thank you to Cheshire YFC for the amazing events they have put on over the past year to help support the work we do. We are thrilled to announce that they raised a massive £7,791 from all of their events! We were so honoured to have been chosen as their Charity of the Year and have absolutely loved following their progress. The MPS Society strives to create a community for those affected by rare diseases and it’s been wonderful to connect with a like-minded community group. We can’t thank them enough for being there for one of our families during their time of need. Thank you Cheshire YFC, you are all AMAZING!

Your fundraising stories

Walking the extra mile

Thank you to Nikki Clarke and her family for walking a half marathon in June to raise money and awareness for the MPS Society all in honour of her niece Lilia who was diagnosed with MPS III 3 years ago. Nikki, her husband and three children raised a fabulous £650 by taking on this amazing event, and we wanted to say how grateful we are to you all for doing this to raise funds to help support and care for our families affected by MPS, Fabry, and related conditions. Nikki said: ‘We achieved our challenge and were happy to be doing something together as a family for the charity’. Thank you from everyone here at the MPS Society!

A proud runner

Thank you to Tom Burston who ran the Jersey half marathon in the middle of June and raised an amazing £4,342 in honour of Ollie who sadly died from a severe rare disease, GM1 Gangliosidosis. Tom has said 'It genuinely blows my mind how Scott and Ella (Ollie’s parents) have faced up to this and have

battled through the initial uncertainty through prognosis, the constant sleepless nights, and ultimately accepting what awaited Ollie. I'm so immensely proud of them - and Ollie'. Tom is now looking to plan more fundraising events for us and his lifelong friends. We look forward to working with him in the future. Thank you so much for helping us to raise awareness and funds for the MPS Society!

Pushing to the limit

We would like to say a huge thank you to Stephen McCawille who ran the Mont Blanc Marathon in June and raised £600 to date in memory of his brother Shaun who had an MPS condition. Stephen said:

It was an obscenely difficult race, it took me just over 10 hours to complete but I eventually got there and there were still around 30 people out on the course when I finished, to put things in perspective!

Thank you for pushing yourself to the limit for the MPS Society in memory of Shaun. We really appreciate your continued support! Amazing scenery too!

Running with purpose

A big MPS thank you to Christopher Waters who ran the Swansea Half Marathon in June for his friend's daughter, Eevee, who has an MPS condition. Chris says: ‘Eevee’s been incredibly brave throughout her treatments and the least I could do was raise money for the charity they have been closely using throughout. Eevee is back home now and not letting anything get in her way.’ Thank you Chris for all your amazing efforts in raising awareness and an incredible £360 for the MPS Society!

A joint effort

We welcomed Dewinder and Sukhi to MPS House, who kindly donated £500 in a joint effort with Wembley Lions Club and Harrow Care Plus. Dewinder and Sukhi’s connection to the MPS Society began when their daughter, Simran, was diagnosed with MPS I Hurler-Scheie. As some of you may be aware, Simran sadly passed away in 2019 but Dewinder and Sukhi’s connection to our community still remains strong. Take a look at the lovely tribute to Simran. Thank you to everyone involved in making this donation. It means the world to us.

Thank you to everyone who has donated to the MPS Society this month, your support means the world to us!

Thanks to your efforts, an amount like this could help us to assist more than 60 families a year with tailored support, advocacy and information.

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