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

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

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.

Photos

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.

Stories

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.

Resources

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.

Sam

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.