Myotubular Trust fundraising events 2019

Our friends at Myotubular Trust have places on offer in several fundraising events this year. As there is no public funding available to fund research for centronuclear and myotubular myopathy, the Trust rely heavily on people taking part in these events and the support of the networks of those affected by the condition.

Given the rarity of centronuclear and myotubular myopathy, this network is relatively small but the funds raised by supporters to date has made a huge difference in the journey to finding a treatment for the  conditions, whether it’s contributing to Ana Buj Bello’s work on gene therapy, Jocelyn Laporte’s work on DNM2 down regulation, Jim Dowling’s pre-clinical work on re-purposing tamoxifen for x-linked myotubular myopathy, or going toward the current grant round. You can see what a difference a small army of supporters can make below. A small army really can make a difference.

Places are on offer in several events this year, including some new events. If you, or someone you know, would like any further information about any of these events, or would like to take part, please email Myotubular Trust.

  • London Hope Walk: Saturday 18 May 2019
    A 10km walk from London Bridge to Battersea Park which takes walkers across 10 of London’s iconic bridges. 
  • London to Brighton Ultra Challenge25 and 26 May 2019
    A 100km or 44km walk or run between London and Brighton, over either one or two days.
  • ASICS London 10k21 July 2019
    A 10km run for runners of all abilities which takes you through the streets of London and past some great attractions.
  • Velo North1 September 2019
    A closed road cycling event through the awe inspiring North Pennines countryside –  50 mile and 100 mile places available.
  • Devon Hope Walk7 September 2019
    A 10k rural coastal path walk, circling around the pretty Devon village of Noss Mayo.
  • Serpentine Swim21 September 2019
    Places available for both the one mile and two swims around the Serpentine in Hyde Park, London.

Please note: every penny raised by supporters goes into research, as the Myotubular Trust raise the running costs of the charity separately

2018 London Hope Walk

Myotubular Trust logo

Christmas 2018

Christmas is fast approaching, so below are some ways you can raise funds to support research into centronuclear and myotubular myopathy while buying your Christmas cards and gifts.


The Myotubular Trust Easyfundraising eStore raises funds for the charity every time someone makes a purchase there. To date £1,249.23 has been raised and during the first three quarters of this year the eStore has raised £184.26 simply by people shopping online.

There are a wealth of shops to be found there and all make a donation, anytime you shop using the eStore link, at no cost to the customer. Donations are also made if you say change your credit card, switch your energy provider or renew your insurance.

Below are stories from some of the stores regular supporters which explain why they like to support the Myotubular Trust when shopping online. If you would like to join them, you can also visit the Easyfundraising eStore below.

Advent calendar giveaway

During December Easyfundraising are giving away £10,000 in prizes in their Advent Calendar Giveaway. There are daily prizes of £250 and a Christmas Day Grand Prize of £5,000 for one cause. With your help it could be the Myotubular Trust.To be in with a chance of winning prizes for yourself and donations for the Myotubular Trust, visit the calendar each day between 1 December and 24 December to open a window and learn about the prize on offer that day (don’t forget to click the pink ‘enter’ button after reading about the prize). It’s free to enter and no purchase is necessary.

Advent Calendar Giveaway

Advent calendar giveaway image

Easyfundraising logo

Christmas raffle

Buy tickets online for a chance to win prizes worth over £250 including a cashmere poncho by Pure, Jaeger men’s black wallet and card holder, Disney film bundle, books, games. chocolates and more. Tickets cost £2 each and the draw will be made on Monday 10 December.  By taking part you will be supporting the Myotubular Trust to raise funds for research into centronuclear and myotubular myopathy. You can buy your tickets until midnight on Sunday 9 December.

Myotubular Trust raffle prizes

Charity cards

Shop for Christmas Cards at Charity Cards and 25% of the value of your order will be donated to the Myotubular Trust.

There are 30 different designs to choose from and it will be printed in your cards that they were bought in aid of the Trust – you can see some of the designs below. For the full range see the Charity Cards website below.

To learn how the Myotubular Trust use your donations, visit their website.


The Myotubular Trust Easyfundraising eStore raises funds for the charity everytime a purchase is made there. There are a wealth of shops to be found there and all make a donation, anytime you shop using the eStore link, at no cost to the customer. You can also raise commission if you are looking to say change your credit card, switch your energy provider or renew insurance.

Below are stories from some of the stores regular supporters which explain why they like to support the Myotubular Trust when shopping online. If you would like to join them, you can visit the Easyfundraising eStore below.

Mike and Diane

Mike and Diane have been shopping online to raise funds to raise funds for the Myotubular Trust for many years now. Mike regularly uses Amazon for buying cds and dvds, computer and electrical equipment such as computer components and has made larger purchases such as a video recorder and a television this way.

Diane shops at Marks and Spencer and has purchased concert and theatre tickets from Ticketmaster for concerts such as Michael Ball, Barry Manilow, Take That and musicals in Liverpool and Manchester.

Mike and Diane


I signed up with Easyfundraising a while ago to help benefit the Myotubular Trust as my son Zak is diagnosed with myotubular myopathy – but sometimes I forget that there is this really good online shopping facility where a little bit of my usual spend will be donated to a charity that is close to my heart.

I admit, a couple of times I have clicked straight through to the retailer, forgetting that if I get to them through easyfundraising it will automatically collect a small percentage of what I’m spending and donate it to Myotubular Trust. So now I have a large yellow post-it note stuck on my home screen to remind me to do it every time I online shop (alternatively, you can download the donation reminder which will remind you if a shop gives donations, so no need for a post-it note).

Hughes family

Easyfundraising seems even better and easier to use than ever: it remembers who I am when I visit and there seems to be loads more high profile shops and retailers now signed up to make a donation to the Myotubular Trust whenever you spend with them. What I hadn’t realised is that there are travel companies signed up too – so I can make hotel and holiday bookings through these and benefit the Myotubular Trust.

The biggest plus for me about using this way to shop is that it feels so good knowing that I’m also helping Zak and others with myotubular and centronuclear myopathy – all out of the retailer’s profits. Knowing this has also helped me change my shopping habits too – choosing online buying if I don’t need things in a rush. So more often now, I will browse for things in the shops, take photos of the product label, have a little think about if they will suit/fit, etc and then buy them through this online facility.

I’ve recently asked my husband’s employers if they would be willing to make all their office purchases and travel/hotel purchases through Easyfundraising too. The good news is that they came straight back saying that they would be ‘very happy to’. I didn’t feel guilty asking, as it’s not costing them anything more than they would already be spending on travel, etc.

If you aren’t already signed up – I would love it if you too could consider online shopping this way? If we all collectively remember to shop through Easyfundraising, just imagine how much we can raise to help our community … and all for the sake of remembering to make just one extra click on the computer. I hope you can discover a few bargains along the way too. Happy shopping and fundraising!


I love to shop, whether it be a gift for someone or a treat for me and I love Easyfundraising, shopping there regularly now for all sorts of things.

For those of you who don’t know, Easyfundraising is like a giant shopping centre … think the Trafford Centre in Manchester, Westfields in London or Liverpool One but online. However, unlike a regular shopping centre, all the shops within this shopping centre give a donation to the Myotubular Trust, whenever a purchase is made with them.

It isn’t complicated in the slightest … here’s the science bit. All you have to do to ensure your shopping generates a donation for the Myotubular Trust is visit the Myotubular Trust Easyfundraising cause page. Search for the retailer you want to shop with and you will be taken to a page which tells you what percentage of your purchase the retailer will donate when you shop with them. Click the ‘go shopping and raise funds button’ and hey presto you’re done. Your shopping will now result in a donation for the Myotubular Trust.

There are over 3,000 retailers to choose from and I now check Easyfundraising before I buy anything at all, as I love the special feeling I get on finding that my purchase will benefit the Myotubular Trust. Donations can vary from pennies to pounds … sometimes many pounds, say if you are booking a holiday, renewing your house insurance or switching your energy provider.


High street shops such as Marks and Spencer, Debenhams, Dorothy Perkins, Argos, Top Shop, Lakeland, Next and so many more can be found on Easyfundraising. Toiletries and makeup can be purchased from Boots and Superdrug. There are a number of book shops on Easyfundraising – I have used both Amazon and Waterstones but my current favourite is Book Depository as they don’t charge postage. I use Amazon when downloading music and if I want something a bit special I visit Not on the High Street.

And it is not only online that I am able to help as I have registered for in store donations too. Cafe Nero are one of the shops who pay a donation when people shop in store, so each time I buy a coffee on my way to work, I am able to help the Myotubular Trust too. If you shop at Officer’s Club or Blue Inc they give in store donations also.

So because both my dad and me are diagnosed with centronuclear myopathy and because I think it is very unlikely that I will ever take part in a fundraising event which sees me running a marathon or a 10k, climbing a very high mountain or swimming a very large sea, I think shopping with easyfundraising is a lovely way for me to help a cause so very close to my heart and when I see the donations mounting up, it makes me want to do it all the more. If you haven’t tried it and you or someone you know is affected by centronuclear or myotubular myopathy, I would urge you to try it too. The pennies raised quickly make pounds and many pounds equal research … and maybe one day a treatment or a cure for centronuclear and myotubular myopathy.


The Easyfundraising eStore for commission based charity shopping is a great initiative, and I love how easy it all is.

When our son Tom was alive, internet shopping was absolutely the only way I kept up with birthdays and Christmas as we never really got out to any big shops. Even if Tom was strong enough to go out, I only ever wanted to take him to places he would love like the park and playgrounds and friends’ houses – like all little boys he really wasn’t too keen on shops!

Since Tom died it has been very important to me to do everything we can to continue to fundraise for research into this condition – hence I spend all my spare hours working for the Myotubular Trust. It’s a busy but very rewarding time in our family’s life, and in our sadness at Tom’s absence we all know we’re doing something that makes a difference.

However I am always careful to make sure each of the children is just as important, and no matter how heartbroken or busy we’ve been over the years Christmas and each child’s birthday is a very special time. How great therefore to know that even when I’m buying presents it still makes a difference!

I know only too well how important every penny is to research, so it is immensely gratifying to click on those links, look after my living children’s Christmas, with one eye on the research that will give a future to other boys like their brother Tom.