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Registered Charity No: 1130455


The Menkes Foundation UK was formed because as a family, we have been directly affected by this rare metabolic... read more


Menkes Disease (MNK), also commonly known as Menkes Syndrome, Copper Transport Disease and Steely Hair... read more


At this current moment in time, there is unfortunately no known medical cure for those suffering from Menkes Disease... read more


Keep up-to-date with all of our up and coming fundraising events and activities and take a look back at some... read more



Welcome to Menkes Foundation UK

Offering help, advice and support to the families and friends of those affected by Menkes Disease.


Latest News

Menkes Foundation 2017 Round-Up.


Menkes Foundation UK's round up of 2017 and the amazing fundraising that has been carried out by a wide range of amazing individuals!This list is not exhaustive so if your event is not on here drop us an email and let us know! 

To begin the update we must firstly apologise for our slight absence on the update front … In April 2016 we lost our sweet precious little soldier Ollie, he fought his battle with Menkes for as long as he could but became tired and grew his angel wings on 12th April 2016. We as a family founded Menkes Foundation in 2009 when Ollie was just 2 years old. We developed the aims and objectives of the charity and have been fundraising ever since. The loss of Ollie has impacted us all beyond words - that is not to say that we have not been busy behind the scenes!! There is an update below of the fundraising that has taken place since our last update.  

So let’s go back a little …

Motown Night November 2016 – a fabulous night was had by all. The night comprised of a live band, the brilliant 'Dancefloor Deluxe' a silent auction and a raffle. Some amazing prizes were donated by numerous companies allowing us to raise a staggering £3,250. A special mention goes to Darren Cooke, Director of Rangemoor Property Development Ltd, for donating the Man United VIP Box at Old Trafford for the auction, Aston Villa FC for the signed shirt, Mayfair hotel London for the overnight stay plus many more fabulous donations! Most of all thank you all those that came along, bought/sold the raffle tickets and had a great night with us! 

12 races in 12 months a real challenge - for anyone! Scott Williams took this on and completed his target with the ultimate race "Birmingham Marathon 2018". Smashing his £1000 target and raising £2201.60. With Ollie as his inspiration and his family as his support he ended up completing 13 races!  

Along with Scott we had many other runners in the Birmingham Marathon who had places these superstars are below along with their glorious amounts raised: 

Neil McKevitt £713.20 who ran in memory of Ollie 

Jamie Clarke £1332 who ran in memory of Ollie 

Kimberley McDonagh £270 who ran in memory of Ollie 

Maxine Williamson £255 

Aimee – Woods Jackson £250 

Kerry Richardson £360 

Paula Kimberley £ 578 

Ann-Marie Skidmore £385 

Bev Mannion £260 

Stephen Davis £250 

Ian Rowlands £155 

So with the marathon completed there are another couple of special mentions and they go out to John & Michelle Evans, some dear friends of Menkes Foundation UK who have raised a staggering £1400 between them - at the last count! John has run ‘Johns Bar’ where he sets up darts matches in his converted garage and the teams make donations to Menkes foundations to play! Michelle has started up her own photography business ‘Capturing Memories’ and from the shoots she donates a percentage to Menkes Foundation UK. A huge thank you!!! 

1000 miles for £1000

2017 also saw Simon Redford and Louise complete 1000 miles for £1000, the dynamic duo ran various races challenging them both mentally and physically in Ollies memory to raise £1000 which was donated between both Menkes Foundation UK and The Donna Louise Childrens Hospice. Well done and thanks guys!  

We have also had money donated from the staff and students of Bronte Small School at West Walsall E-ACT Academy. Thanks ladies & gents!!  

Another heartfelt contribution to the foundation in memory of another little angel Harry Hope. Thank you Danielle Maynard for fundraising in Harry’s memory. 

Copper for Copper

Kelly Wright has completed her fundraising – copper for copper losing the lbs for pounds… Kelly is the mummy of Sebastian a beautiful little warrior who has Menkes Syndrome. Thanks for your support Kelly !

Team Tommy

As if we would dream of not mentioning the humbling efforts of Team Tommy… over the past 3 and a half years the collective Team Tommy have raised for the Foundation a figure of £21000. Wow. Incorporated into this was a wonderful contribution from The Gym Group on Brighton Seafront who contributed £6849.63 in Tommy Burton’s memory. All monies have been raised through incredible hard work and dedication, lots of organised fun runs and also individual sponsored events. Tommy, I am sure, is so so proud of you all, as are we! 

Click the image below to read Amanda's story...


What does it have in store you may ask??? Well so far........  

Shedding the pounds for Menkes Foundation UK

To kick start the year’s fundraising Chris ‘Stato’ Stevenson has started the new year with a new him. Having already lost a whopping 25lbs in 7 weeks so far Chris has set a goal of losing 5 stone in 12 months. Setting himself a target to raise £500. Dig deep and lets gets Chris there! Visit Chris’ justgiving page - Shedding the pounds for Menkes UK. To read Chris's story, visit:-

or click the image below.

The London Crematorium Company PLC

The foundation has also received a very welcome donation of £5720.30 from The London Crematorium Company Plc. We were nominated as their charity of the year by Kerry Hanson who has a Great – Nephew that has been diagnosed with Menkes. We are extremely grateful for your contribution and hope that little George is doing well.

3 Peaks in 24 Hours

August 2018 will see Josh, Alex and Rob taking part in a massive challenge, and that is to complete the 3 Peaks in 24 hours!! On the 18th August they will be scaling the dizzy heights of Snowdon , Scafell and Ben Nevis! Now that is surely worthy a donation of anyone's hard earned cash… you can sponsor them at:

Ollie's Autumn Ball - 15th September 2018

‘Ollie’s Autumn Ball' – 15th September 2018. A black tie Charity Ball … buy your tickets now to secure your seat at what promises to be an amazing night. Alternatively, if you would like to support the event but can't attend how about sponsoring the night or donating a raffle prize! Email - 

Over the last 3 years we have noticed a significant increase in different people fundraising for Menkes which is absolutely amazing, if you have something in mind and need our help with your fundraising give us a shout and we will support you in any way we can. We would love to hear from you! 

The Color Run 5K 2017.

Devon Hart and friends will be taking part in The Color Run 5K 2017 this coming June (11th) to help raise funds for, and awareness of Menkes Disease. The Color Run is the largest 5K Color fun run in the world and celebrates healthiness, happiness and friendship. Learn more at

To help with their fundraising efforts, the group have set up a Just Giving page where donations can be made. For more information or to make a donation, please visit

12 Races in 12 Months - A personal pledge.

Scott Williams has made a personal pledge to raise awareness and funds for Menkes Foundation UK by taking on 12 gruelling races over the next 12 months. Starting off with the Milford Mash Up 10k run on October 17th, followed by the Wildest Peaks 10k Trail Run  on November 20th and the Sneyd 10 mile Pudding Run on December 11th, Scott plans to complete his pledge in September 2017 where he will compete in an Olympic length Triathlon. We would like to take this opportunity to wish Scott the very best of luck and offer him our sincere appreciation for what he is about to embark upon.

Please keep up to date with all the latest developments and donate generously through Scotts Just Giving page at:-

2016 Autumn Fete - A heart-felt thank you.

We would like to take this opportunity to say a heart-felt thank you to everyone who helped make our Autumn Fete at Bradley Village Hall a great success. Thank you to everyone who donated prizes for our raffle and tombola, and to everyone of you who gave up your time to help out on the day. Finally, thank you to everyone who attended and helped us raise £2,120 for Menkes Foundation UK. Pictures from the fete can be viewed here.

Menkes Foundation UK Pin Badges Now Available.

We are pleased to announce that we now have these fantastic pin badges for sale at just £2.00 each with ALL proceeds going directly to our charity.

If you would like to purchase a pin badge and show your support for Menkes Foundation UK, please email us at


Donations from have contributed another £300 to the charity this year. This is an easy way to raise money for the charity simply by changing your online shopping habits. Please click here to learn more.




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Registered in England and Wales with the Charity Commission - Registered Charity No: 1130455


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