Re: Good luck!
Just wanted to say best of luck to all the runners for tomorrow.
I can't believe how different the weather looks like it is going to
be this year - if I remember rightly, one year ago we were having a
rather hot spell and it was incredibly hot that day.
Anyhow, I hope it doesn't rain but if it does, bear in mind this gem
that someone said to me when I once moaned about our rainy English
Just be thankful you are a human being and not a sponge - human
beings are lucky because when it rains they can get warm and dry
afterwards but if you were a sponge you would have to stay wet all
There is real logic there somewhere!
Good luck everyone.
(trying to be a little bit funny but probably failing miserably)
----- Original Message -----
From: Gary Beck
Sent: Friday, June 29, 2007 10:43 AM
Subject: RE: [Myotubular_Myopathy] Good luck!
Just wanted to say a big thank you to Wendy and Anne for organising
Family Conference Day. I know you have put such a lot of work into
under difficult circumstances. I'm sure things will go well on the
shall certainly be there and looking forward to meeting lots of new
Good luck too to everyone doing the London 10k on Sunday - from the
of the weather reports - it may be renames 'the London 10k swim'!!!
you're taking your waterproof cameras.
Best wishes to all.
>From: "Wendy" <wendyhughes@...>
>Subject: RE: [Myotubular_Myopathy] Good luck!
>Date: Fri, 29 Jun 2007 08:15:36 +0100
>Wishing all the US families who are meeting up next week the very
>of luck - we wish we could be there too and will be thinking of you
>In the UK/Europe we have our 10K runs this Sunday 1st July where a
>families are able to meet - anyone is welcome to come along and watch
>us. We are meeting before (from 8am) and after the run (from about
>10.30am onwards) in St James's Park - the Queen's Park in front of
>Buckingham Palace, in the triangle of grass by the Inn on the Park
>restaurant. Look out for the banners and balloons!!
>Our MTM/CNM Family Conference is also scheduled for 8th September.
>We've now finalised everything with our guest speakers: leading
>researchers from Finland, France and UK. We hope to post out booking
>forms to those who have expressed an interest in attending the
>conference on Monday, and full details will be available from our
>website from Tuesday. Please email if you would like us to send you
>details of this conference directly to your email address or by post
>contact@.... We hope the conference will create an
>opportunity for many families to meet and that the presentations on
>current and new research will bring some new hope for families.
>Best wishes to you all.
>Wendy and Anne
>Charity no: 1113809
>contact@... / research@...
Win tickets to the sold out Live Earth concert!
- I am touched to hear that... Speechless!!!
As I said a while ago, I will try to have a mtm day here in Brazil,
Rio de Janeiro, too.
Also, I would like to share that Gabriel got pneumonia on his right
lung and then a bit on the left lung... and now he is pouring
secretions and all that ugly and boring stuff.
But... As we know, those boys are stallions :) and he is M-U-C-H
better after only 48 hours of antibiotics... His response is amazing.
Will try to keep u all posted.
--- In Myotubular_Myopathy@yahoogroups.com, "Anne Lennox" <anne@...>
> Dear all
> Thank you so so much for all the personal emails over the last month
> Tom died. We are lost, lonely and bereft without him, but thekindness of
> our friends both those with us, and those in email contact, has meant sobrother,
> much. Some of you will like to hear that Sophie and Charlie, Sam's
> have been trading pictures. So the link goes on!in their
> I thought I'd tell you a heart warming story. Tomorrow in a small town
> called Cumpana on the Black Sea in Romania, they are having a Myotubular
> Myopathy day. They have never had a child with myotubular myopathy
> town, or even know of one in Romania. But an English ex-colleagueof mine
> lives there now, and when he told people about Tom and the conditionand the
> stories of all our children, they decided they wanted to do something toit's 40
> help. So, tomorrow afternoon, 6pm, Central European time (because
> degrees in the middle of the day!) the town will close down andthere will
> be a whole series of childrens and adults races and competitions,followed
> by big barbeque and party. There are literally 100s of people involved.lives.
> And very simply, because these people are touched by our children's
> Karen, Jack Vardy's mother, is going out there and will be keeping a
> diary, which we will circulate when she get back. She's a greatwriter, so
> it should be really lovely.
> With love