Our World The Information Point for Centronuclear and Myotubular Myopathy

Newsletter for the
Centronuclear and Myotubular Myopathy Community

Issue 1: 2016

Information Point news

  The Big Sunflower Project

  Share a story

Myotubular Trust news

  10th anniversary film

  10 years, 10 miles, 10 bridges
  Easyfundraising

Rare Disease Day

  Rare Disease Day

  Blue for the Cure



  European Family Conference

ENMC workshops

  214th ENMC workshop

  219th ENMC workshop

 


  Patient Registry


•  Myo the traveling turtle


•  Spaceathlon challenge


•  Brewing for Beggs

•  How I met your father

•  Wedding bells (part two)

Hello and welcome to the latest issue of Our World.

There has been a lot going on in the CNM/MTM community over the first six months of 2016. The Big Sunflower Project is back for a sixth year and it is the biggest year yet. Seeds have been sent to 258 places in the UK, Netherlands, Germany, Croatia, Hungary and Sweden - sunflowers are also being grown for the project in the USA.

This year The Myotubular Trust are celebrating their 10th anniversary - 10 amazing years of raising money for research into centronuclear and myotubular myopathy. Please take a few minutes to watch the short film they have made which explains about the work they do. In this issue you can also read about the 10 years, 10 miles, 10 bridges fundraising walk which took place in London earlier this year to mark the anniversary.

February saw the ninth Rare Disease Day take place and WillCure, once again held their Blue for a Cure event, which saw people wearing blue on the day and sharing their photos on social media to raise awareness of centronuclear and myotubular myopathy.

In May the European family conference for centronuclear myopathies took place in Frankfurt - organised by Myotubular Trust and Zusammen Stark! the conference was attended by 45 families, from 12 countries and 16 researchers from Germany, France, Holland, UK, US and Canada.

In this issue you can also read about two recent ENMC workshops, the new Patient Registry, the further adventures of Myo the turtle, the Spaceathlon fundraising event which my dad and I took part in to raise funds for the Neuromuscular Centre in Cheshire and the second Brewing for Beggs fundraising event which raises funds for the Beggs Lab Congenital Myopathy Research Fund.

There is also an interview with the lovely Aminah Hart about her book How I Met Your Father and an update on the wedding of Neil and Ginny which The Information Point first reported on in 2015.

I hope you will enjoy reading this issue of Our World and thank you to everyone who has contributed. If you have a story to share, please get in touch so this can be included next time around.

Toni

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