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Together we can transform lives


Welcome to your first fundraising roundup. This is our way of saying THANK YOU for all the amazing support you have shown us over the past month and to celebrate your incredible achievements. Whether you have been running, baking, singing or engaging in other astounding activities to show your support and help raise vital funds for the MPS Society, we appreciate each and every one of you. Take a look at the selection of amazing fundraising stories below to see what you have been up to or maybe collect some ideas to set up your own challenge.

Keith & Andy's 100KM Ultra Run

Huge congratulations to Andy and Keith who completed their 100km Ultra run on the South Downs in the middle of May. Both are recovering well and say they thoroughly enjoyed the challenge. The two iron men have raised over £4,000 for the MPS Society which will help to support approximately 20 families throughout the year with specialist information, advice, and care. We are so grateful to you for raising all-important awareness and funds for us, thank you so much.

"I’m so pleased we have raised money for such a valued charity and been able to help so many families. " Keith

Your fundraising stories

A bold decision

We want to say a huge thank you to an inspirational woman Elizabeth Heath who, together with the help of family, friends and colleagues has now raised over £10,000 for the MPS Society in memory of her son Jack. Jack sadly passed away in 2013 aged 13 after a fight against MPS II Hunter. In 2014, Elizabeth took the bold decision to shave her hair off and raised over £1,000 for the MPS Society. On 17th April this year, she did it again to raise more awareness and funds. “I wanted to try and get over £10,000 on the tenth anniversary of Jack’s passing,” says Elizabeth. “People are not aware of the illness and I hope through the fundraising we have been able to educate people about it.”

Touching base

A huge thank you to Dan Lee who trekked to Mount Everest base camp alongside a group of Co-op colleagues raising a fantastic £5,000 for the MPS Society in honour of his colleague's son who has MPS VI. Dan has said ‘I have been lucky enough to work with an inspirational lady for the last year whose 10-year-old son Josh has MPS VI. I have been deeply touched by Josh’s story and I'm privileged to have been able to take on this challenge for the MPS Society to support them in their research into this progressive disease that has no cure’. This amazing challenge was due to take place in 2020 but was cancelled due to Covid. We are so pleased that you were able to finally take part in this amazing event and help so many families and individuals affected by MPS, Fabry, and related diseases. Thank you Dan and everyone at the Co-op!

Community is everything

When one of our youngest members, 18-month-old Ada, was diagnosed with MPS I last year, her amazing toddler group rallied around her and her family making sure they gave them as much support as possible. During MPS Awareness Week, they raised £45.15 by having a fun blue day, wearing blue, making tasty treats and icing biscuits. Thank you so much St Andrews Toddler Group!

Fitness marathon

Thank you to Emma and James who raised money in honour of Freddie Goodwin who has an MPS condition. Emma took on a gruelling 26-hour marathon of fitness, raising over £9,000 for the MPS Society and a similar amount for The Christie Charitable Fund in aid of her brother who was diagnosed with cancer last year. Thank you to James as well who took on the Jurassic Coast Ultra walk and raised an incredible £1300 for us!

Hitting the high notes

The amazing Chater Community Choir gave their latest concert in Rutland Village Church, South Luffenham in aid of the MPS Society. There was a varied programme from Rodgers, Irish folk and Hammerstein, to Elton John and Adele. The evening was a great success, raising £832.45 for the MPS Society.

We are on the ball

We are delighted to be the new charity partner at Bermondsey Town FC! Thank you for the support and we are looking forward to working with the team. You are amazing!

Wearing it blue

Nazia has Morquio IV Syndrome and despite facing difficult times, she wanted to do something positive during MPS Awareness Week. She decided to raise awareness and funds at her college by wearing it blue. They managed to raise an amazing amount of £101. Thank you so much Nazia and Hive College for helping to support our community.

A sea of blue

We would like to say a big thank you to Katie Mackelden and Churchill Park Academy who raised an incredible £737 during MPS Awareness Week in memory of Thomas, a former student who had an MPS condition. Staff and students wore blue for the day, helping us to raise awareness and important funds for all our families and individuals affected by MPS, Fabry, and related conditions. Thank you, Katie, and everyone at Churchill Park Academy for creating a sea of blue and raising a fantastic amount of money for the MPS Society!

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 150 families a year with tailored support, advocacy and information.

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