Nemaline Myopathy Support Group

NM Conventions

NM Convention 2007

Castle Director's Review

Vikings (the Roedde family) about to invade Scotland! Well, what can I say? NMC07 was the eagerly awaited successor to NMC04. And it did not dissappoint, as the following details explain. 15 nationalities were represented by 86 delegates. 20 people with nemaline myopathy(NMers) and their families. A further 8 NMers sent a parent on their behalf. This year there were many more families and individuals who were new to the NM Community including Graham Kerr who only lives an hour from me in Glasgow! I finally met my first NMer from Scotland.

Some of the early arrivals on Friday evening. Friday:

There was panic in the air for me this afternoon as various flights into Edinburgh were delayed. Maggiorine and Anja from Netherlands didn't arrive at the hotel until 2am! And our first Speaker was under threat of a cancelled flight. Fortunately everyone appeared in the morning for Anita to start her talk. Kick-off was 30 minutes late, so I was saved from doing a speach! I thought I had one ready, but it turned out I had only dreamed I was writing one the night before!

Some of the early arrivals on Friday evening.

Vikings (the Roedde family) about to invade Scotland!
Vikings (the Roedde family) about to invade Scotland!

Marina and AnitaSaturday:

Dr. Anita Simonds talk, Update in Respiratory Care, raised a few eyebrows and several people have now taken action to request sleep studies or purchase a cough assist machine. Many parents had not realised the importance of a sleep study and that there were so many possible symptoms. Physiotherapy in Myopathies was given by Marina Morrow, a Senior Physiotherapist. Again, many important issues were highlighted to improve or maintain strength, but also not to overdo exercise. A balance must be found.

Jess having her first lesson in Scottish country dancing with Keiran.
Jess having her first lesson in Scottish country dancing with Keiran.

The twins interviewing Alison with adoption papers.Maggiorine gave a short speech about her recent trip to have Philippe receive Dolphin Therapy. This was followed by a 20 minute film of Philippe swimming with a dolphin. A buffet lunch allowed people to mix and see their children again. The rest of the day was free time. Some visited the local town of Peebles, while others used the hotel pool or socialised.

My friend Diane and my sister Alison looked after the childrens room which was well used. Tom and Keelan watch DVD's while twins Brooke and Taylor tried to adopt Alison as their new mother! (Psychiatric assessments are under way.) Fortunately Louise did manage to take them home.
The twins interviewing Alison with adoption papers

Tastey! Keiran the Hotel Manager told me at lunchtime, that he and some hotel staff had arranged a little party for us in the Function Room for at night. This turned out to be a quick lesson in Scottish country dancing! Champagne and orange juice was supplied along with prizes for the dance winners, my mother and me. I blew out the candles on the NM website's birthday cake which was then taken away to be sliced up for serving.

Prof. Nigel Laing. Juliet Wilson, Taryn and Dr. Carina Wallgren-PetterssonSunday: This was science day. Dr. Carina Wallgren-Pettersson's talk ran over time because of so many people's interest and questions. One slide of particular note listed symptoms of high CO2 levels in the blood often causing the need for nocturnal ventilation. Personally, I had 13 out of 14 symptoms and requested an ambulance should be called immediately! haha. After a coffee and comfort break, Dr. Nigel Laing told his story of how he began working on nemaline myopathy, and why he would like to have his Eureka moment before he retires in 2019. Nigel's often comical stories included why he wants wallpaper made out of the pictures of Billi Ilkovski's muscle cultures, such as intranuclear rods, of the different actin mutations. And a stained-glass window of some of the immunohistochemistry showing different muscle fibre types in red and green done by his post-doc Dr Connie Jackaman. I liked the pictures too. They were like abstract modern art.
Everyone commented on the high quality talks and how much they had learned. Many people left with something to follow up and/or a Speakers details. We had more socializing time than NMC04, so that gave us time to meet all the new faces. Although I still did not get to talk with the two Norwegian families. :-( I have now met my first NM contact from Scotland! Graham Kerr contacted me on the previous Wednesday, the websites birthday, and so he came along. After eight years finding people all over the world, Graham pops up from just 40 miles away! He is also willing to help me fundraise etc.

Things are moving along nicely now. Our NM Community is expanding steadily, but still exclusive enough for everyone to know each other through our friendly Yahoo chat group. I made a small suggestion that there are now enough people to maybe have two separate NMC each time, or more often. 2010 is a long way away. We could maybe have a European meeting each year now!

I hope to add more photos later.

Unfortunately a few people are missing from this group photo.
Unfortunately a few people are missing from this group photo.

Plant a tree for NMSG


Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

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