On a weekend in May 2016, the fourth European Family Conference for Myotubular and Centronuclear Myopathy took place in Germany. Below the organisers Myotubular Trust and Zusammen Stark! write about the event.
On a May weekend full of sunshine and hope, over 100 participants gathered together near Frankfurt in Germany for the fourth European Family Conference for Myotubular and Centronuclear Myopathy. There were 45 families represented from 12 countries, and 16 researchers from Germany, France, Holland, UK, US and Canada. The conference was presented in both German and English with simultaneous translation via headsets.
The weekend began with a beautifully colourful spectacle when everyone released a balloon and a wish into the sky. This was followed by a relaxed and happy get together over dinner and drinks. On Saturday, conference delegates heard about the latest developments in research findings, as well as other studies and initiatives in the field of centronuclear and myotubular myopathy. We were so fortunate to have had such great support from the academic community and their presentations were greatly received.
On Saturday afternoon and Sunday morning there was a series of workshops on topics that ranged from Pre-Implantation Genetic Diagnosis, Firefly adapted toys and seating, outcome measures for clinical trials and updates from Audentes Therapeutics on the studies they are currently recruiting for and progress towards human clinical trials for gene therapy.
Children and teenagers had a chance to enjoy a programme especially organised for them on Friday, Saturday and Sunday. They were able to play together with other children inside and out. Afterwards their beautiful faces were painted as tigers, dinosaurs, pirates or beautiful butterflies, they made funny pictures of themselves or other children and then made lovely photo frames for those pictures. A very funny puppeteer made all children laugh with a silly lama, a hilarious donkey named Caruso and with the monkey Charlie. Children were also able to act with real actors to play Red Riding Hood, with a big grandma with the huge ears and mouth. Older children enjoyed playing soccer and going on a treasure hunt.
We also had a rolling demonstration of the re-launched Myotubular and Centronuclear Myopathy Patient Registry which is now managed by TREAT-NMD at Newcastle University. There were lots of opportunities over the course of the weekend for families to connect, for the children to play (and play and play) and for friendships to be strengthened and made. We are delighted to share with you some of the photos, presentations and extracts from the day below which we hope you will find enjoy.
Zusammen Stark! were able to hand over a donation of 10,000 euro to the Myotubular Trust that shall contribute to this year’s call on research projects on centronuclear myopathies.
Sunday was Mother’s Day in Germany and all mothers got a special present: sunflower seeds of The Big Sunflower Project for Centronuclear and Myotubular Myopathy 2016. We now hope that sunflowers will grow in all homes of all participants and with them the good hope and good spirit of the conference.
The conference presentations are now available on the Zusammen Stark and Myotubular Trust websites.