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.

Grassroots Giving 2018

The Information Point and The Big Sunflower Project have been shortlisted for Grassroots Giving 2018 to receive a donation of £500. Over 740 applications were received and 377 groups have now been shortlisted.

Funding such as this is crucial to the work of The Information Point continuing and the winners will be decided by public vote, so if you like what we do please vote below for us to win.

Voting closes on 12 October 2018.

Grassroots Giving logo.

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