Be active for Charcot Marie Tooth disease awareness month. Show you've got nerve!
This is now open for registering your interest https://www.facebook.com/events/1798630850369155 and t-shirts are now available to preorder (they'll be delivered later this week). All profits (about £6) from the sale of the t-shirts will go to our Research Fund.
Swim, wheel, ride, walk, paddle, run, do yoga and get out there to show that you've
got nerve and that you support the search for a cure for CMT, the most common hereditary neuropathy impacting 1 in 2500 people.
Don't forget to purchase your Awareness Day Kit at our webshop! For £10 you get 10 posters, 10 flyers, 5 What is CMT leaflets, 10 silicon wristbands, a car sticker and a 2gb flash drive with all our publications on it, to give to your consultant, GP or whoever you feel most needs educating!!
And don't forget to change your profile picture to this image, and lets have our Awareness Ribbons all over Facebook!
As you'll know from reading these E-bulletins, Douglas Sager has been working very hard for the last eighteen months on raising funds for, and then organising the production of, a professionally filmed awareness raising film.
This is an exclusive still "sneak peek" from the first rough edit!
The ideas changed over the year, from the original "Ministry of Silly Walks" idea - which did bother some of you - to the version which is now in post-production of a high tech, computer graphic representation of CMT!
The grand Premiere of this film will be at the first EVER CMT Awareness Event at the Houses of Parliament no less! Professor Mary Reilly will be talking about her work, I'll be talking about the work and history of CMT UK, Karin Rodgers will be talking about our Youth work, and then ---- ta da.... the showing of the film. If you are in London on 13th September, and would like to attend, it is by invitation only - but there may possibly be space. Email Douglas on firstname.lastname@example.org to put your name on the list.
Then.... will come your part - publicizing this film FAR AND WIDE. We want it to be hot stuff on YouTube, as it'll be a really important and useful tool to educate all and sundry on how CMT affects us!
And if anyone knows any celebrities with a lovely speaking voice, please get in touch with Doug urgently, as we need someone to do the voiceover!!!
Scottish Conference - URGENT!!!
Just a quick reminder of our Scottish Conference - 17th September at Hilton Edinburgh Airport. Everyone in Scotland and Northern England on our database should receive a letter in the next day or two, but if you're not a member and would like to come, use this link to book: