Myotubular Trust fundraising events 2020

Our friends at Myotubular Trust have places on offer in several fundraising events in 2020.  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 next grant round. You can see what a difference a small army of supporters can make below.

If you, or someone you know, would like any further information about any of the events shown on this page, please email Myotubular Trust.

Or if you prefer, you can organise your own event. See the ‘Fundraising News’ page on the Myotubular Trust website for more information.

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

Myotubular Trust London Hope Walk 2019.

Myotubular Trust logo

US MTM-CNM Family Conference 2019

The next MTM-CNM family conference will be held in St Louis, Missouri, in July 2019. The conference will mark 10 years since the first bi-annual conference was held in Houston, Texas in 2009.

The conference will provide the chance for families to hear directly from medical professionals, clinicians, researchers and pharma industry members, about the most up to date research and care practices, in one place, for one weekend, as well as providing the opportunity for families to directly collaborate with medical professionals, engage in ongoing research and meet with other families affected by myotubular myopathy.

Further information about the conference can be found in the MTM-Family Connection newsletter below.

US MTM-CNM conference

MTM-CNM Family Conference logos.

MTM-CNM Family Connection conference announcement 


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 Big Sunflower Project 2018 (end of year report)

2018 was the eighth year of The Big Sunflower Project. Seeds were sent to places across the UK and people also took part in Germany, The Netherlands, Austria, Croatia, the USA, New Zealand and Costa Rica. For the second time the project was also joined by many people growing sunflowers in memory of Emil, who was diagnosed with myotubular myopathy and sadly passed away in 2016.

Sunflower growing season is now over in the UK but if you have sunflowers waiting to bloom, you can still share your photos. And if you are in a part of the world about to get its summer, please consider buying a packet of seeds and growing a sunflower to raise awareness of centronuclear and myotubular myopathy, it would be lovely to continue receiving sunflower photos over the winter months.


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 were provided by the following organisations

Watering sunflowers

Grassroots Giving

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.

The Big Sunflower Project recently took part in the Skipton Building Society Grassroots Giving initiative to try and win funds to help with our work. Over 740 applications were received from community groups, clubs and organisations across the UK and we were over the moon to be shortlisted to be one of the groups to win £500.

In order to fairly allocate the 165 pots of money that were up for grabs, the Skipton Building Society asked the public to say who they wanted to receive the funding. 50,000 votes were cast for the shortlisted groups and sadly we did not win. However, if you voted, thank you very much.

The Big Sunflower Project is a non profit group run on a voluntary basis, so funding such as this is crucial to what we do. However we will continue to seek out funding opportunities over the coming months.

Watering a sunflower

Project map

This year 324 places were plotted on the project map which can be seen below – click a sunflower to learn more about the people growing sunflowers in that location.


Over 800 photos were received from 114 participants this year. Photos from the 2018 project can be found below.

Sunflower in Germany


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.


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.

Sunflower in Austria

Harvesting sunflower seeds

Don’t forget that if you have grown a sunflower this year you can save the seeds for growing next year or you can donate these to the project for others to grow. You can learn how to harvest sunflower seeds below.


Further information

Further information about the project can be found on here on the project website and on the project social media pages.