Together Even Stonger 2018

Together Even Stronger, a conference for those affected by myotubular and centronuclear myopathies, their families, doctors and carers, took place in London on 14 and 15 July 2018. The bilingual (German and English) family conference was jointly hosted by The Myotubular Trust and ZNM – zusammen stark e. V. and provided an opportunity to:

  • meet other families
  • listen to renowned researchers
  • get to hear about ways to manage the condition
  • hear about trials and studies

Presentation from the conference can now be found on the Myotubular Trust and ZNM – zusammen stark e. V. websites.

Family conference 2018.

Organisation logos

The Big Sunflower Project 2018 (mid year report)

2018 is the eighth year of The Big Sunflower Project. Seed distribution began in January and seeds have once again been sent to places across the UK. Sunflowers are also being grown in Germany, The Netherlands, Austria, Croatia, the USA, New Zealand and Costa Rica and for the second time the project is being joined by many people growing sunflowers in memory of Emil, who was diagnosed with myotubular myopathy and sadly passed away in 2016.

Sunflower seedlings

The Big Sunflower Project is only possible because of the kindness of the organisations who support our work with donations, discounts and funding. Sunflower seeds for The Big Sunflower Project 2018 have been provided by the following organisations.

In addition the project received funding from:

The aim of The Big Sunflower Project

The aim of The Big Sunflower Project is to raise awareness of the rare neuromuscular conditions known as centronuclear and myotubular myopathy. The project raises awareness by sending seeds to people who have never heard of the conditions and requesting photos and stories in return, which are posted online, again raising awareness of the conditions.

Project map

309 places have now been plotted on the project map which can be seen below – click a sunflower to learn who is growing sunflowers in that location. The project wholeheartedly welcomes participation from anyone who wants to raise awareness of centronuclear and myotubular myopathy by growing a sunflower and people who buy their own seeds are welcome to join in – if you would like to do this, please get in touch advising where you will be growing your sunflowers, so you can be included on the project map too.


So far this year 146 photos have been received from 46 participants. Photos submitted to the project are shared in the Information Point newsletter and on the project social media pages which raises awareness of centronuclear and myotubular myopathy.

Don’t forget when sharing your photos to advise where the sunflowers are being grown and when sharing the photos on social media use #TheBigSunflowerProject.

Local Charities Day

Sometimes the photos are used in applications for grants and funding such as that described above or where an opportunity arises to raise awareness of the project, such as on Local Charities Day, an initiative of the Department of Digital, Media, Culture and Sport, which helped raise the profile of the project at a national level.


The project website now has a large collection of stories from past participants – if you would like to share your story too, please get in touch.


The resources area of the project website was updated earlier this year. If you are using your sunflower seeds for educational purposes, fundraising events or would like to raise awareness of centronuclear and myotubular myopathy at the place where you are growing your sunflowers, you can download flyers from this area of the website. You will also find resources for teaching children and to start conversations about equality and diversity.


Make a donation

There is no charge for project seeds or the cost of postage, the project does however, welcome donations to ensure the future of the project and to enable seeds to be sent to as many people as possible each year. If you have donated for your seeds, thank you – if you like to donate you can learn more about how to do this below.

Tinsley Meadows

Further information

Further information about the project can be found on The Big Sunflower Project website and on social media.


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.