"Working to support people affected by Charcot-Marie-Tooth disease"

CMT United Kingdom E-ComMenT
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Wow - summer has really come with a vengeance, hasn't it? I refuse to moan about the heat (although it's been bordering on 30 degrees celsius in the office!), because we get nice weather so rarely! But I know it can be hard to cope with - how are you keeping cool in the heat?
We're in the run up to Awareness Month again, so this email is mostly about that, and what you can do to help!
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Awareness Month -
Call to Action!
All of us in the world's CMT organisations often hear from people with CMT saying that "it's not happening fast enough." "It" represents public awareness and greater understanding for Charcot Marie Tooth disease, effective treatment options, such as physiotherapy and orthotics and hope for genetic treatments into the future - frustration that we have every right to feel. We get frustrated too. But, everyone can push our cause forward by channeling frustrations into opportunities and bringing the community together as there is strength in numbers - together we ARE stronger. So, we ask you, people with CMT, carers, health care professionals, policy makers...everyone in our global village, mark your calendars for CMT Awareness Month September 2013 so we, collectively, can make it happen faster!
International CMT Awareness Month is just 2 months away, and we are excited about engaging the public at large in this annual awareness campaign to help us collectively take the conversation level on CMT disease up a few notches! We recognize that CMT disease is a 24/7/365 battle for more than 2 million people worldwide and until a treatment and/or cure is achieved, every month is CMT Awareness Month.
This is an opportunity for everyone to fire up all engines-and to use all communication resources-to drive the dialogue on CMT so:
- the general public understands CMT better;
- children and people with CMT receive earlier diagnoses and better access to what treatment there is;
- medical professionals engage with people with CMT to improve their care and quality of life;
- urgently needed resources for the CMT community are given a priority, including increased funding for CMT research.
Whether writing to the media on-line or off-line on the impact of CMT, hosting fundraisers, sharing information about CMT with your network of friends, colleagues, and family members, or donating to support programs and research grants to raise CMT's profile and find arrestment...we need to work together to generate more awareness for CMT!
Whatever you do, every single action-even something as simple as reposting this to your Facebook page-counts and helps our community get the word out about CMT so the public will recognize it.
Everyone who has or cares about someone with CMT has got to stand up and be counted as someone who cares about the issues facing us all. Together-and with your help-we can bring help, hope, and healing to all persons worldwide impacted by Charcot Marie Tooth Disease.
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Awareness Month New Logo
Following our great meeting in Antwerp with lots of our CMT colleagues from around the world, we have agreed to use a new logo to represent CMT Awareness internationally. All the organisations are going to personalise the information but the ribbon will be everywhere, hopefully! If you use Facebook, please use this as your Facebook profile picture for September, and encourage your friends to do the same - whether they have CMT or not. You can find the same image on our Facebook page at www.facebook.com/cmtuk or at www.cmt.org.uk/get-involved.php
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What Else Can you Do?
HOLD a Cake Muffin and Tea Party - raise funds and awareness by inviti ng friends and colleagues to indulge in a cuppa and something sweet. You can find all the information you need at www.cmt.org.uk/Teaparty.php. You can download invites and whatnot from there, or you can request a pack from the office.
Distribute flyers or posters to your local clinics - either hospital or GP or your podiatrist, physiotherapist or anywhere else you can think of! This is the latest version of the Awareness Month flyer - you can download a .pdf version, set up to print 2 on a sheet from here (Don't forget to select "fit to paper" when you print this - it's actually scaled for two A4 on an A3 piece of paper, but will reduce nicely to fit A4) And this is the latest Awareness Month Poster, which you can download from hereYou can also purchase an awareness month pack from the webshop at http://www.cmt.org.uk/catalogue.php?&cid=7&pid=34 for £10. This includes copies of the poster, awareness leaflet, some copies of "What is CMT", some silicon wristbands, a car sticker and a CD-ROM containing all our leaflets and resources.
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And last but not least...
If you can help with our media campaign - papers always like stories about "real" people, please get in touch with Paula Hunter at paula@cmtuk.org.uk and/or complete the survey below to submit your story and details to her. Please complete a case study form, available to download here or http://www.surveymonkey.com/s/NS8GSXSIf you've done this before, there is no need to do it again, Paula has kept a record of your details and will be in touch if she is likely to need you.
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Membership of CMT United Kingdom
So what are the benefits of membership?
Access to our members only section of the CMT website with its huge library of publications
Three editions of our full colour magazine. ComMenT, per year
Monthly e-ComMenT's with lots of extra news.
Local groups around the country
Local contacts - there are almost 30 members around the country who are happy to talk to you by phone or by email - find the list on the website in the Member's Area
Discounted attendance at our fantastic Annual Conference - next one on 5th April at the Hilton Hotel, Swindon, Wiltshire.
And all this for only £22per year, or £27 for families! (New rates as from 1st October 2012) You can also now pay monthly by direct debit.
Join at www.cmt.org.uk - if you sign up for an direct debit, you can even have the first year free!
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Help us continue our work
If you can make a donation, you can use your Paypal account here
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Social Networking
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So lets all try to make this the best Awareness Month EVER.
And don't forget, we can do so much MORE if we had the resources, so if you can make a donation - especially giving a monthly donation by direct debit (even just a small amount) - we will all benefit. You can sign up for a monthly direct debit here
- don't worry, it's totally secure, and there is the option of downloading a paper form from the same link, if that's better for you.
Or there are plenty of other ways to donate - request a coin box, if you don't already have one, donate a bag of clothes, or recycle your inkjet cartridges. You can find out about all these initiatives at www.cmt.org.uk/awareness.php
And thank you!
Regards
Karen
Karen Butcher, CMT United Kingdom 0800 652 6316 or text 07790 789008 email: info@cmtuk.org.uk |
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