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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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.
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.