Lili and Josh, whose son, George, has myotubular myopathy, and Lili’s friend, Amy, contacted us to say that they were hosting a coffee morning in support of the Myotubular Trust. The coffee morning date was set for a couple of weeks later. What Lili, Josh and Amy...
Patrick became a huge supporter of the Myotubular Trust having been barber to a young boy, Joshua, who had myotubular myopathy. In Patrick's own words, "Knowing Joshua literally changed my life." Following Joshua's death, Patrick, who had never before entertained...
2026 marked the year that Nathaniel, who had myotubular myopathy, would have turned 18. In honour of Nathaniel and to mark the milestone, Nathaniel's dad, Jonathan, big sister, Annie, half brother, Aneurin, and Lisa ran the Bryn Meadows Caerphilly 10k to raise funds...
We are delighted to invite you to join us for the first of three Hope Walks in 2026. The first walk takes place on Saturday 6th June, in London. Scroll down for more information and details on how to register. Or perhaps we can inspire you to design your own, in your...
Over 150 of our supporters joined us this year across the walks in Liverpool and London and it truly was quite something to see so many people in our new t-shirts, in our common goal to find a treatment for myotubular and centronuclear myopathy. Our 2025 Liverpool...
Join us at 11.00am on Sunday 14th September for a new Hope Walk for 2025 - the Liverpool Hope Walk. Our annual Hope Walks have been held since 2008, having been instigated by a wonderful group of supporters to whom we will be forever grateful. The walks, wherever...
Read about last year's, 2024 London Hope Walk here! Join us at 10.30am on Saturday 20th September for this year's London Hope Walk. Our annual Hope Walk has been held since 2008, having been instigated by a wonderful group of supporters – Jo, Lizze and Laura. Each...
We are proud to share the news that McCarthy Stone have sponsored our new supply of fundraiser t-shirts. Our long-term supporter, Duncan, sought sponsorship from the company in honour of his beautiful little boy, Will, who had myotubular myopathy. Will's family and...
With the encouragement and help of a few of our young supporters, we held the first Myotubular Trust led Hope Walk in Manchester, just a week after our annual flagship walk in London. Whilst we didn't benefit from the glorious sunshine we had in London, nothing could...
Our 2024 London Hope Walk was simply wonderful, thanks to the great supporters of Myotubular Trust. The sun shone brightly from start to finish as over 90 walkers walked 10k over 10 beautiful London bridges. The atmosphere was, as ever, very special as we walked in...
A big shout out and many congratulations to our long term supporter, Ian, who recently completed The 60 mile Christie Manchester to Blackpool bike ride, in memory of his grandson, Aaron. We are both impressed and grateful to Ian for his continued support and...
Understandably, it’s not very often that our supporters choose to skydive to raise research funds for Myotubular Trust, but that is exactly what Lauran did this summer in memory of her brother, Christopher. Lauran incorporated the skydive into her holiday in Australia...
Join us at 11.00am on Sunday 22nd September for this year’s Manchester Hope Walk. Our annual Hope Walks have been held since 2008, having been instigated by a wonderful group of supporters – Jo, Lizze and Laura (pictured below). The walks, wherever they take place,...
A group of students from Kingsbury High School based in North West London took part in the First Give Charity Project. This initiative allows students to collaborate in small teams to try and win £1000 for their chosen charity. This particular group chose to represent...
Thanks to our wonderful supporters, the 2023 London Hope Walk really was a very special event. We were joined by over 60 friends, old and new, the majority of whom had travelled long distances from across the UK to join us. We were also delighted to have been joined...
Dave and Karen, supporters of Myotubular Trust since day one, recently hosted their 17th annual golf tournament, The Jack Blunsdon Golf Tournament, in memory of their precious son, Jack We cannot thank them enough for all that they continue to do! And we have to give...
Our thanks and congratulations go to our long term supporter, Yasser, and his wonderful friends who, inspired by Yasser's nephew, completed the most recent Tough Mudder event - a gruelling and challenging 15km course with over 30 obstacles and more mud than you can...
Annual Flagship Event Back in 2023! Please email contact@myotubulartrust.org to join us for this flagship London Hope Walk, starting at 10.30am on Saturday 23rd September 2023 (our first ever autumn Hope Walk). We will be walking 10 kilometres across 10 Bridges,...
Well done and thank you to Ben - Stacey - James - Shane! We have been fortunate to have had four incredible supporters taking to the streets of Brighton, London and Belfast recently and running marathons in support of the Myotubular Trust. Ben, Stacey, James and Shane...
We are so happy to learn from our friends in Germany, that the community of supporters is growing steadily: inspired by Eric, who has X-linked myotubular myopathy (XLMTM), some fantastic fundraising events were held in late summer. A school friend of Eric’s mum,...
A huge well done to Jennie May, our longstanding supporter who recently ran the London Marathon in memory of her beautiful little boy, Nathaniel. This was Jennie’s third marathon triumph -a hat-trick! Jennie told us, “I was fortunate enough to get a ballot place for...
For the 16th year, our unending supporters, Dave and Karen, organised the annual golf tournament for 'The Jack Blunsdon Memorial Trophy' in memory of their beautiful son, Jack, who died on his first birthday. Dave and Karen have organised numerous fundraising events...
We would like to extend our endless thanks and congratulations to Ruby, Rebecca, John, Michelle, Matthew, Jonas, Paul and Stuart, an intrepid group of work colleagues. who recently completed the Lake District “Buttermore Horseshoe” challenge. The determined team...
Saturday 11th July marked the first Myotubular Trust London Hope Walk since May 2019 and it certainly didn’t disappoint. The sun shone brightly for us and nearly 70 friends, old and new, supported the event. Early starts and long journeys were made by many...
Ten friends came together from across the UK to take on the challenge of running a total of 100km in memory of Robin, who had myotubular myopathy. Robin’s dad, Tom, was amongst the team of runners. The group, most of whom hadn’t run since their school days, took part...
On an oh so cold morning in January a brave pair, Orla and Cara, swam in the icy cold sea at Fountainstown Beach, Cork in Ireland. Their 'Christmas swim' had been delayed courtesy of COVID but the determined pair took to the sea at the earliest opportunity, sporting...
Inspired by her best friend, Harry, Missia raised money for both Myotubular Trust and another charity close to her heart, Women’s Aid. Missia kindly told us about her fundraising: “Hello Myotubular Trust family ❤️ My best friend, Harry, unfortunately suffers from...
We’re delighted that Jeans For Genes have given Myotubular Trust an unrestricted grant award to contribute towards our running costs. Jeans for Genes are a not for profit organisation whose annual campaign encourages children and adults to wear their jeans to school,...
Dean Munro is honoring the memory of his baby son with the launch of a magical children’s book series. Monte Gray Noel Munro was born with myotubular myopathy, a rare condition that causes severe muscle weakness and breathing difficulties. He passed away in June 2021...
Endless thanks to Dave and Karen who recently held their fifteenth annual golf day in memory of their beautiful son, Jack. Our thanks also to Jack’s little sister, Daisy, for her sales skills, and to all who took part in the tournament, and donated prizes. We remain...
With thanks to our supporters, Dean and Kirsty, who arranged a hugely successful golfing event in memory of their precious baby, Monte. We are so grateful to them and to all who supported their event. Dean and Kirsty told us, “On Friday 13th July we arranged a charity...
Mandy Saunders from Ovingdean Nursery writes: 'Our Art Exhibition was such a success, a truly lovely morning in the sunshine. I was so inspired by all the children at Ovingdean Nursery. They were excited to show off their talent to family and friends. We extended our...
We’re thrilled that Myotubular Trust has been chosen for support from the charity 'Global’s Make Some Noise’. Global’s Make Some Noise works across the UK identifying community need and funding small charities that are "making a real difference to people’s lives". The...
'Since Noah made his entrance into the world, I have been in awe of Kate and her wonderful husband James, and how they created the most amazing life for him. Kate and James have always said that Noah gave them the strength to be able to do what they have done, which...
On October 3rd, after months of being postponed, the 14th memorial golf day for Jack took place – in strict accordance with current government guidelines - at Ham Manor Golf Club. Jack’s dad, Dave told us, “We had 47 golfers playing in a Texas Scramble format in teams...
While many of us struggled to find something to keep us occupied in the early days of lockdown, that definitely wasn’t the case for one lovely supporter, Irene Turnbull. Irene took up her needles and hook and began to knit and crochet the most adorable dolls and bears...
Friends simply don’t come much better than 11 year old Stanley, who wanted to help his friend and classmate, Milosz, so much that he ran a marathon in 26 days. Milosz has myotubular myopathy and he and his family dreamed of him having a power wheelchair to give him...
When we put out the first invite last year for supporters to join our Vitality London 10K 2020 running team, Zaneta Laurence responded almost instantly. Zaneta was inspired to take on the challenge as her daughter had been in primary school with Zak, now 24, who has...
In the midst of lockdown, it was wonderful to hear from mum Natasha, of one amazing little girl’s fundraising. Coral, aged just 5, is one of our youngest ever supporters and she took on the 2.6 challenge in memory of her little brother, Finlay, who had myotubular...
In recognition of her lovely nephew, Rian, Paula Lynch completed a 7 mile bridge run in glorious Florida Keys, to raise funds for the Trust. The seven mile bridge run is an organised event which was cancelled as a result of the COVID-19 crisis. However, Paula decided...
We would like to extend our immense thanks and congratulations to Jennie, Alana and Jack, who recently completed the Vitality Big Half marathon in support of the Trust. In the days leading in to the run the weather had been appalling but on the day the sky was blue...
We recently heard that one of our supporters, Norbert Kerek, was given the 'Outstanding Innovative Idea' award by his employers, Bibby Line Group. The award was given in recognition of Norbert’s fundraising for Myotubular Trust and for having raised awareness of...
Friends, Adele and Keiron Prosser, and Cath and Martyn Bridgeman, joined forces to fundraise for two charities close to their hearts – Myotubular Trust and I Wouldn’t Change a Thing. The foursome were inspired by their awesome sons, 8 year old William who has...
Chris Murphy, who lives in Australia, had signed up for the challenge of climbing Mount Kilimanjaro, when he decided he would like to use the opportunity to support a charity. A phone call with his mum led him to support the Trust, having heard about little Rubén who...
Over the summer, the 13th Jack Blunsdon Golf Tournament was held at Lewes Golf Course, in memory of Jack, who had myotubular myopathy. Lots of teams took part competing for various trophies and prizes and we were particularly delighted to hear that the Jack Blunsdon...
It really didn’t matter that it rained on and off, nothing could spoil the good mood of the walkers who had come along for the first Cork Hope Walk.
The 8km walk, which was arranged by Orla Lynch and Stephen Stack, took us along the beautiful Rochestown to Blackrock coastal path. The views were stunning despite the grey sky, and we even got to admire Blackrock Castle where we stopped …
Earlier this year, we heard from Siân Carson, who told us that she was going to arrange a fundraising event, having been inspired by her gorgeous 1 year old son, Rubén (Roo), who has myotubular myopathy.
We could never have anticipated what Siân was going to pull off – a hugely successful evening event that was attended by more than 230 guests who came out to celebrate Rubén. For the …
This year we tentatively planned a fourth Devon Hope Walk for the Myotubular Trust for early September, hoping everyone could make it, after once again inviting all our friends and family to join us. Appreciating they are all busy people, this time we gave an option...
Massive thanks and congratulations to Sarah, Emily and Tara, who recently took part in the 10K Pretty Muddy Race for Life at Sefton Park, Liverpool. The trio raised a wonderful amount in sponsorship again this year for Myotubular Trust and Cancer Research – both...
Every year the Myotubular Trust organises their own walking event called the 'Hope Walk' in London over a weekend in May. This year, we are doing things a little differently and as a result, two more walks are taking place this September in some really beautiful...
On Sunday 4th August, four very close friends – Tomas, Charlie, Jonathan and Matthew - completed the RideLondon 46 in memory of Tomas’s son, Oliver, who passed away shortly after his birth in 2017. Tomas told us, “I’ve never done anything like this before and am a bit...
On July 21st the Westminster London 10k run took place, attracting over 30,000 runners of all abilities, amongst which were several wonderful Myotubular Trust runners. The weather was incredibly kind; having started out very hot and sunny, it cooled down once the...
Our Flagship Hope Walk. The 10k, 10 bridges Hope Walk was pure joy from beginning to end and thankfully the rather damp and chilly weather forecast proved to be wrong. We were joined by 68 walkers, 9 families and 4 dogs and, as ever, it was a wonderful opportunity to...
Massive congratulations and thanks to university friends, Phil Brunetti, Craig Strachan and Naeem Ghulamali who recently walked the 100km Ultra Challenge from London to Brighton. The trio aptly named their team ‘Batmen and Robin’ in recognition of the inspiration...
Massive congratulations to our long term supporter, Jennie May, who completed the Milton Keynes marathon on 6th May. Jennie ran the marathon, her first ever, to mark the 10th anniversary of the death of her beautiful baby boy, Nathaniel who had myotubular myopathy....
We are so grateful to Sarah Woods and her family for their very generous donations in memory of their wonderful Uncle Billy - our thoughts are with them all. And massive thanks too to Sarah, Tara and Emily for taking part in the Pretty Muddy Race for Life at Sefton...
On Friday 8th February, despite horrid weather, a crowd of hardy London insurance market runners sacrificed their lunch break to support Myotubular Trust by running either 5k or 10k. Katy Beechy, Programme Director at Texel Foundation, told us, “At the start of the...
Pupils, staff and parents of St Joseph’s Primary Academy in Cleethorpes, supported a few charities, including Myotubular Trust by holding their very own 'Bake Off', inspired by the popular series on British television. Teacher, Mrs Bradley, told us, “the children paid...
We are delighted to announce that for a limited period, our long term supporter and established artist, Paul Le-Tallec, is raising funds for Myotubular Trust by donating 40% of the sale price of two of his stunning new limited edition prints...
Our wonderful network of friends in Barcelona is expanding and we couldn’t be more grateful for their support. The most recent fundraiser to help fund research into myotubular myopathy was arranged by the indoor cycling instructor, Àlex García, who pedalled non-stop...
For the third consecutive year, we extend our heartfelt thanks to our friends at Fita Alta Madness - Jordi Balagué, Lluís Roselló , Dani Mateu and Gerard Costa, for arranging their third running event in Catalonia, Spain. The increasingly popular event is truly...
Our long term supporter, Harvey Tanday, contacted us just weeks ago to let us know that colleagues in his office were arranging an office cake sale and raffle. Harvey had worn his Myotubular Trust t-shirt to work on a dress down day, and two of his work mates, Hailey...
Heartfelt thanks and congratulations to Yasser Mohammed who recently completed a Tough Mudder challenge, and raised a substantial amount in sponsorship. Yasser told us, “This particular Trust is close to my heart as my nephew who was born in 2016 suffers from...
Thank you to Hayley Ball who organised the 12th Jack Blunsdon memorial golf day, which was a huge success. Massive thanks too to Dave and Karen, Jack’s mum and dad, and their family, friends and colleagues who supported the event, and to the trophy sponsors, CNC...
A wonderful fundraising story from our friends in Catelonia. You guys rock! Massive, massive thanks. “It is said that music soothes the savage beast... Maybe it's true but this time music served to raise money for the research of myotubular myopathy. This story...
We were very fortunate this year to have had two London Marathon runners – Tom Deakin and Leigh Jones. Tom ran in memory of his little nephew, Oliver, while Leigh ran in support of his close friend, Georgina. Both Tom and Leigh ran in fantastic times, despite a...
Long term supporter, Patrick Scrivens, has been fundraising for the Trust since 2011 in honour of Joshua who was a regular customer in his barbers shop. Joshua made a huge impact on Patrick and inspired him to take up running to raise research funds to help children...
Sophie and Alan Kennett have thought of an ingenious way to raise regular funds to support their son Roman and their chosen charities. They have set up a weekly Bonus Ball to play amongst friends and family. The big bonus for the participants is that the odds of...
We have had a great long term relationship with Christie & Co since we set up the Trust in 2006. We are delighted therefore to share the good news that they have raised over £35,000 for the Myotubular Trust in 2017! Christie & Co has the largest team of sector...
The 11th Jack Blunsdon Golf Tournament was held at Seaford Head Golf Course in memory of Jack, who had myotubular myopathy. The ever popular event was a huge success and the biggest yet with 53 golfers taking part. It was a beautiful day and Jack’s little sister,...
Year 7 student Annie decided to pitch to her fellow form members in 7G at Rugby High School when they were choosing a charity to support for the school year. Annie nominated the Trust in memory of her dear little brother, Nathaniel. Annie was up against around 10 of...
The Myotubular Trust is delighted to be receiving sponsorship in 2016/17 from Christie & Co, the UK’s largest business sales specialist. Since the charity was set up in 2006, Christie & Co has supported our work with donations, t-shirt sponsorship, attending...
On July 18th the Medical Team completed a 25KM Thames Walk from their London offices in Blackfriars, all the way to Kew. The route alongside the Thames was stunning and provided the odd opportunity for refreshments and pit stops! Among the team of walkers was Simon...
We are immensely grateful to Aaminah and Raabiah who undertook their first 10k run this summer, inspired by one year old Hasnain, who has myotubular myopathy. Aaminah and Raabiah took to the streets of Slough to prepare and train for the big day – determined to do...
We are very grateful to Jordi Balagué, Lluís Roselló , Dani Mateu and Gerard Costa for organising the second, and hugely successful, Fita Alta Madness fundraising event in Catelonia, Spain. The event is truly unique. It was inspired by Lluc, the son a friend of Jordi,...
Inspired by Milosz, students dress down for the day We are so grateful to the students at Catmose College who raised a fantastic amount at their summer term non-school uniform days. Thank you to everybody who took part. Year 9 student, Holly, told us, “As one of our...
Massive thanks to the Leeds team who held a summer barbecue on July 5th for professionals and clients. During the event, they held a champagne raffle which raised £100 for the Trust. The lucky winner of a bottle of Moët & Chandon was Joseph Richardson, Manager...
Following their successful practice climb of one of the Yorkshire Three Peaks, 22 members of staff from the North offices took on the Yorkshire Three Peaks Challenge; a route over 24 miles long which included 5,200ft (1,585m) of ascent. Laura Hunter told us, “Well, we...
On Friday 9th June, a team from Glasgow and Edinburgh offices took on the highest mountain in Britain, Ben Nevis. We were delighted to have heard from Louise Plommer that everyone felt a great sense of achievement in completing the event. Seeing the photo of the team...
A fantastic fundraising event was arranged in Madrid, by Veronica and David, and inspired by their son Aaron. There was a static bike ride…knitted keyrings for sale….a collection, and a very cool photo frame at the end! MTM #Juntos Somos Fuertes “Desde España...
Inspired by Joshua, Ray Lewis has been a wonderful advocate and supporter of the Trust for many years. Ray has taken part in the Oldham Hope Walks, he has abseiled, and last year he ran his first 10k, raising a fantastic amount in sponsorship for the Trust year on...
We had a great turn out for the 10k, 10 Bridges London Hope Walk – we were joined by over 70 walkers, and four myotubular / centronuclear families. It was a particularly special day and the weather was very kind to us. Yet again, we have raised a wonderful amount in...
The Goal I have always dreamed about being able to complete a challenge like a marathon. In 2016 I saw a friend running in the London Marathon; the amazing atmosphere and all the emotions it evoked made me desperate to have a go. I wanted to raise money for Myotubular...
If you are a motorcycle racing enthusiast and a fan of Guy Martin, then this fundraiser will definitely appeal to you…. Robbie Kemp, and his sister, Rebecca, are fundraising for the Myotubular Trust. They have put together a fantastic array of goodies, all signed by...
The President of Fairwood Bowls Club, Mrs Susan Taylor, was inspired to fundraise for the Myotubular Trust in memory of her friend’s grandson, Archie. Throughout Archie's journey he has shown us inner strength when physically he was unable; the light that shone in his...
We had two supporters, Rachel Nolan and James Davies, taking part in the London Marathon in support of the Trust this year. We are blown away by both their finishing times and their fundraising and we cannot thank and congratulate them enough. Rachel, who ran in...
The Myotubular Trust is delighted to be receiving sponsorship in 2016/17 from Christie & Co, the UK’s largest business sales specialist. Since the charity was set up in 2006, Christie & Co has supported our work with donations, t-shirt sponsorship, attending...
Given its popularity in 2016, we are walking and crossing 10 of London's iconic bridges again this year. As before, we will start on London Bridge, walking 10 kilometers, and finishing with a picnic in Battersea Park. The walk is on Saturday 20th May, starting at...
We cannot thank Sarah and Mark enough for making a donation to the Trust to mark their recent wedding. Sarah and Mark very kindly chose to make a donation to the Trust instead of having wedding favours. They also collected donations from their wedding guests...
22nd December 2016 – announcement by Bank of England – read here Wow, what a year!!! My colleagues at the Bank of England have raised an astounding £126,682.21 for the Myotubular Trust, one of their charities of the year 2015/16. I’ve also had a key role in setting up...
Two long standing supporters, Duncan Collins and Roberta Taylor, took part in the Bournemouth Marathon in memory of Will... Two longstanding supporters took part in the Bournemouth Marathon in memory of Will on a lovely Sunday morning in October. Will’s aunt, Berty,...
The Bank of England’s Charities of The Year scheme has been running for many years and I first found out about the scheme just a few weeks into my new job at the Bank. The timing of this encounter seemed to be too good to be true as I had started working for the Bank...
We are so grateful for the level of support we continually receive in Manchester, in honour of Joshua Seville - 2016 being no exception. Year on year Joshua’s mum, Carol, arranges not only the very successful Oldham Hope Walk but for the past three years she has also...
Jordi, Dani, Lluís and Gerard arranged "a minority race for a rare disease" which took place on Saturday 16th July in Catalonia, Spain. It was a minority race as, given the unique setting and the space available, there were only ten runners. The organisers auctioned...
We would like to extend our heartfelt thanks to Mark Fairhurst, a long standing supporter, who recently completed a 3.8km epic swim in recognition of his grandson, Reece. Mark told us, “I agreed to attempt the Derwent water 3.8k epic swim approximately 12 months...
Richard Alldrick, Housemaster of Brown’s House presents a cheque to Anne Lennox for £2,500 from all the members of Brown’s House to the Myotubular Trust. Funds were raised from cake sales, Founders day stall last year and the Brown’s House charity bike ride. Well done...
A 10 mile sponsored walk over 10 of London’s most iconic bridges. 147 people. Seven families with myotubular or centronuclear myopathy with us. Walkers flew in from Germany, Australia, Holland and Italy…some just for 24 hours! And over £30,000 raised for research....
Wow, the weather was fabulous today. Oldham is renowned for being particularly windy and cold but Mr Sunshine really helped us out with probably the best weather we have had so far on an Oldham walk. The decision to move the walk forward so that it didn’t...
On 7th September 2019, at 1.30pm we will be pulling on our walking gear and boots once again and welcoming you to join us to walk the rural coastal path, circling around the pretty Devon village of Noss Mayo. The walk is in aid of the Myotubular Trust. If you would...
Two weeks before the London Marathon, we heard from Nick Thomas that he would be running in support of the Trust. For a small charity such as ours the cost of purchasing places is prohibitive and so we were overjoyed with the news. Nick told us, “I ran my third London...