June 26, 2012 at 11:48 am #74453Southampton Muscle Group-Back to School
I hope you are all enjoying the sunshine! I would like to invite all parents living in or around Southampton to the next muscle group meeting! have decided to theme the meeting ‘Back to School’. The workshop will be an opportunity to talk about educational issues, growing up with a neuromuscular condition, options for the future and mentoring. Lilly Gyergyak, a Paediatric Neurology nurse, will be speaking and I’m hoping John Hastie, the man behind the film ‘A life worth living’, will also be speaking.
With the changing landscape of the education system in this country, this meeting will be a workshop aimed at supporting and advising families about their child’s education and how to manage their condition during this defining period of their lives.
You will also get to hear about the campaign work of the charity, fundraising opportunities in your area, and to share experiences with other individuals living with muscular dystrophy or a related condition.
The details are:
Friday 31st August 2012: 1pm-3pm, Holiday Inn Express Southampton, Botley Road, West End, Southampton SO30 3XA
The venue is wheelchair accessible and there is free parking.
New members are encouraged to come along!
If you are keen please contact us at:
020 7803 2853
I’d also like to hear if you have attended a muscle group in the past and if you haven’t why not!
BadgerAdvocacyDaveParticipantPosts: 32Joined: 09/01/2012June 26, 2012 at 12:06 pm #85895Re: Southampton Muscle Group-Back to School
We have never been to a muscle group before, this is due to several reasons –
1. My son only got definitive genetic ‘hit’ recently, so didn’t feel we qualified on MD
2. Had only heard of them in passing
3. As my son has a congenital myopathy, I feel that these are more aimed at DMD
4. My son is considered ‘mild’ as far as muscle diseases go but in ‘normal’ situations he is considered far from mild!! Would not want to take up valuable space from someone who needs it more.
However, I am beginning to feel that we don’t fit in anywhere else so MD is the best place for us and if we lived near Southampton I think I would have gone to this one due to the education aspect of it.
ZebadwZebadwParticipantPosts: 10Joined: 13/03/2012June 26, 2012 at 1:10 pm #85896Re: Southampton Muscle Group-Back to School
Thanks for you post!
We would love to see you at a muscle group meeting! I can assure you that our meetings are focused on all neuromuscular conditions and deal with a number of issues. You also don’t need to worry about space! We always get rooms big enough for everyone!
Where in the country are you based? I can give you details for the next meeting in your area. It may not cover education as an issue but this is something I could look at in the future!AdvocacyDaveParticipantPosts: 32Joined: 09/01/2012June 26, 2012 at 1:39 pm #85897Re: Southampton Muscle Group-Back to School
Thanks for the reply Badger!
I am Essex based but I have to admit, quite shy to go to these sort of things. Would definitely be interested if other mums/parents would be attending as we don’t know anyone with muscle issues and sometimes it can help to just chat.ZebadwParticipantPosts: 10Joined: 13/03/2012
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