Our World The Information Point for Centronuclear and Myotubular Myopathy

Newsletter for the
Centronuclear and myotubular myopathy community

Issue 2: 2016


Now we are 15

This Information Point celebrated its fifteenth birthday earlier this year. Back in 2011, when the Information Point turned ten, we shared stories about some of our community who were turning ten the same year, so now we are fifteen, we asked some of them to share their stories again.

More about now we are fifteen

  Young girl and small sunflower plant.

The Big Sunflower Project

2016 was the sixth year of The Big Sunflower Project and once again it has been lovely growing sunflowers with project participants old and new around the world - our end of year report for year six is here.

More about The Big Sunflower Project

  Piggy bank and sunflower seedling.


This year the Information Point has had the opportunity to take part in a number of funding initiatives aimed at grassroots and community groups. Find out more and learn how you can help too.

More about funding

  Myotubular Trust logo.

Research news

2016 grant award, Dynacure and Audentes frequently asked questions. The Myotubular Trust provide a round up of some of their recent research news.

More about research news

  Easyfundraising logo.


The Myotubular Trust easyfundraising eStore continues to raise funds for research into centronuclear and myotubular myopathy. Two of its supporters write about why they use the store, what they buy and why they would like you to join them.

More about easyfundraising

  2014 Myotubular Trust conference.

Sharing your personal data

TREAT-NMD is a global organisation bringing together leading specialists, patient groups and industry representatives to ensure readiness for the trials and therapies of the future while promoting best practice today. The organisation has recently produced some guidelines to assist patients considering registering with a registry

More about sharing your personal data

  2017 MTM-CNM Family Conference image.

US MTM-CNM family conference

The fifth biennial US MTM-CNM Family Conference will take place 21-23 July 2017 in Nashville, Tennessee. The conference is looking forward to building on the success of the first four US Family Conferences and early projections look like this will likely be the largest US conference yet.

More about the MTM-CNM family conference

  Myo with Marie, Erin and Shannon.

Myo the traveling turtle

Myo the Traveling Turtle is continuing to travel the world, visiting members of the centronuclear and myotubular myopathy community, bringing smiles and helping us all stay connected, most recently in Northbrook, Illinois and Huntington Beach, California.

More about Myo


Sukhi skis

Sukhi Tanday lives in Milton Keynes and is diagnosed with myotubular myopathy. In October she went skiing for the first time in memory of her friend Tom, to raise funds for the charity SpecialEffect, which works with severely disabled people to use computers with whichever parts of their body that work best, enabling vital inclusion.

More about Sukhi


Seeking vision

Zak Hughes is 20 years old and diagnosed with x-linked myotubular myopathy. Zak started to notice a problem with his vision about a year ago due to corneal scarring caused by years of dry eye issues and earlier this year had surgery to help him restore his good sight.

More about Zak

  Balloon for Emil.

Balloons for Emil

Earlier this year the global centronuclear and myotubular myopathy community came together across Europe and the USA, in Australia, Dubai, Chile, Ecuador and the Dominican Republic to celebrate the life of Emil Fischer Bilbao from Stuttgart who lost his battle against myotubular myopathy in May.

More about Emil

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