Marks33
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Marks33's Discussions

Access to Translarna - a lego movie

Started this discussion. Last reply by Mike O Feb 11, 2015. 1 Reply

 

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Marks33 posted a discussion

Cholesterol

Hi Have any of your boys experienced higher cholesterol and if so, have they been given statins or any other medication to address this? See More
Apr 27
Brid Murray favorited Marks33's discussion Access to Translarna - a lego movie
Feb 15, 2016
Marks33 posted a discussion

Lego for PPMD

Three days to go for the Lego Accessibility set to get to the 10,000 likes for Lego HQ to review the project, with any proceeds going to PPMD so please1. Sign up here https://ideas.lego.com/projects/194182. Join our Thunderclap campaign http://thndr.it/1F6QlgR3. 'Like' our ever growing Wheels4lego​ groupthank you people!See More
Apr 26, 2015
Mike O replied to Marks33's discussion Access to Translarna - a lego movie
Feb 11, 2015
Trinh Nguyen favorited Marks33's discussion Access to Translarna - a lego movie
Feb 8, 2015
Trinh Nguyen favorited Marks33's discussion Access to Translarna - a lego movie
Feb 8, 2015
Marks33 posted a discussion

Access to Translarna - a lego movie

Please view and share this lego movie about the work in the UK being undertaken by the Duchenne community to get access to the drughttps://m.youtube.com/watch?v=b8QAGR41BWASee More
Feb 7, 2015
Marks33 posted a discussion

A powerpoint presentation like no other - 79 characters

79 CharactersPlease watch and share this fantastic Youtube powerpoint video put together in the UK which explains Duchenne using 79 characters per slide, one for each exon.It's simple, original and stresses the need for treatments to be made available as soon as possible - it's a great way to continue to raise awareness ahead of the UK Translarna lobby next week.Please share with your network on Facebook and Twitter - thank you!…See More
Jan 11, 2015

Profile Information

Age(s) of child(ren)/individual(s) with Duchenne:
0-3
City:
London, UK

Comment Wall (3 comments)

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At 10:54am on August 28, 2008, MicahsDaddy said…
Hello Mark,

I am on the committee and the web designer for Kick for a Cure. I will talk with our founder as she knows most of all the presidents and coaches for all the teams in San Diego.

What is the name of the coach at Carmel Valley Manchester that you are talking about? Here is their website: http://www.manchestersoccer.net/index.php

Looks like on September 4, Manchester United’s scouting director Derek Langley will be here.

As for the Galaxy, I don't have any contacts there.

I’ll see what I can do for you.

Take care,

Christian
At 8:28pm on August 25, 2008, Sharyn Thompson said…
Hi Mark,

I saw on Ryan Lochte that you are involved with Action Duchenne. Can you tell me what this is about? My husband has organised the Tour Duchenne (see under events tab), and last year raised $200000 for MD Australia. Since we are moving to the UK, and very much want to stay involved with fundraising, it would be great to know what others are doing and see how we can get involved.
At 10:10am on August 25, 2008, Sharyn Thompson said…
Hi Mark,

We are moving to London in the next 2 months. Who is your son's doctor? Where abouts in London are you? I am trying to get as much info as I can before we arrive. We will be living in Beckenham, Kent. Maybe we can organise a UK Families group?

Cheers,
Sharyn.
 
 
 

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