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Well, another Annual Conference is done and dusted - for me, it's a bit like Christmas - all that work and preparation, and it's gone and over and done in the blink of an eye! Below you can see a link to the photos that were taken.
We have lots planned for the coming months - the Muscular Dystrophy Campaign are organising awareness days during June in Devon and Hampshire, so we're aiming to be at those to spread the word about what we do.
And we'll be starting work on the Awareness Month Campaign soon, I expect. For those of you who use Facebook - did you see the "no make-up selfie" campaign that went viral for Cancer Research UK? They raised £8 MILLION in the space of a couple of weeks. What if we came up with a "naked feet" campaign or something similar? Would you be up for baring your tootsies (splints and all, if needs be) on social media to show the world just how CMT affects us? It's just a possibility that we've been thinking about... If anyone has any better ideas, please do let us know!
Karen
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Annual Conference Feedback
 Thanks to everyone who came to Swindon on 5th April - it was lovely to see so many people, especially new people who'd not been to a Conference before. We haven't had a chance to analyse the feedback forms in detail yet (we do read and take in EVERY one), but there are a couple of points that I can comment on immediately - Firstly - the lack of circulation space.... this was mainly down to the numbers who attended! As the hotel hadn't a huge amount of free lobby space, we'd opted to have all the exhibitors and other tables in the main room - and then of course, there were considerably more people than we'd anticipated, necessitating the tables being pushed together significantly. We'll have to consider whether smaller tables, or rectangular tables, or maybe even a section of seats "theatre style" would be better for the future.
Secondly - eating in the Conference room - again, this was caused purely by the number of people attending. The restaurant isn't big enough at the Hilton Swindon to seat more than 130 people, so with 180 attending the choice was either two sittings for lunch, or eating in the conference room.... we chose the latter. As for the queues that formed, well in part that was our fault, we should have directed operations better, and got people to go to the serveries table by table... hey ho! As for the sound problems - despite our beautiful sound system, we were let down by the most humble of issues - duff batteries! Next year - brand new batteries for all the mics, even if we seem to have plenty left over from this year.... ! It's not an easy task, planning and organising these Conferences - we work really hard to make sure the day goes smoothly, yet every year, something seems to put a spanner in the works! That's life, I guess..... If you'd like to see the pictures that were taken on the day, you can see 207 of them (the best of the best) here on our Flickr site. |
Awareness
And to add to the confusion on 5th April, just before the Conference, Nichola and I went to the studios of BBC Radio Wiltshire to be interviewed about CMT, the importance of raising awareness, and raising funds, and what the Conference was all about. You can listen here from our YouTube channel.
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Calling members in Cambridgeshire
Our local contact for Cambridge, Rosie Croucher, has advised us that there is a new neurologist at Addenbrookes Hospital, who is "delightful" and also very knowledgeable about CMT.
She'd like to encourage anyone within the area to go to see Dr Rhys Roberts - and he's equally anxious to try to gain a large cohort of CMT patients for his case load - the more he has, the better any future research that he may get involved in will be! Of course, you'll need the usual referral from your GP to see Dr Roberts. And if you'd like to talk to Rosie, about this or anything else, her phone number and email address are in ComMenT. Calling members.... Everywhere!Did you know that the Muscular Dystrophy Campaign's Care Adviser service is available to everyone with a neuromuscular condition (like CMT), not just folk with muscular dystrophy? New ones are being appointed all the time - the latest being one for Dorset. You can find their contact details here. Some are clinic-based, others can do outreach work as and when their case-load permits. Generally speaking, you'll need to be referred to the clinic that they support to access them.
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 Information from Disabled Motoring UK
We have recently received information from Disabled Motoring UK regarding Blue Badges. They have been contacted by the company Northgate Services who produce Blue Badges as they were alarmed by the large number of people complaining about the cost of the badge application.
When Northgate looked into the complaints they discovered that people were accidentally visiting the website www.parkingpermit.uk.com/blue_badge/apply.php to apply for their badge instead of going to either GOV.UK or their own local authority website.
People applying through this website were being charged £49.00 to apply for the badge instead of the standard application price which is £10 in England, £20 in Scotland and £2 in NI and free of charge in Wales.
Therefore, we'd like to urge you - DON'T use the link above for renewing your Blue Badge, and make sure you go to the right place!Incidentally, Disabled Motoring UK is an excellent resource for all things mobility related - check out their website at www.disabledmotoring.org |
Fundraising News
We just thought we ought to bring your attention to one or two amazing fundraisers, who could really do with your support:
 The first is John Boniface - his granddaughter, Abbie Abbott, is one of our star CMT Kids, and John has decided to walk the South West Coast Path from Minehead to us in Bournemouth, raising money for us and for another charity close to his heart, Sarcoma UK.
You can read about his challenge and support him, of course - at http://www.justgiving.com/John-K-Boniface
And Nancy Nelson is running the Bupa Glasgow 10K on 11th May -  https://www.justgiving.com/Nancy-Nelson
These are just a couple of our active pages and we'd like to thank EVERYONE who raises funds for us - you are vital to helping us do all the things we want to do - from raising money for research, to educating medical professionals, to raising awareness of the condition - and of course, supporting families and individuals affected by CMT wherever they are in the UK!
You can find a full list of all our Active Justgiving pages here at:
http://www.cmt.org.uk/what-others-are-doing.php
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Membership As you know, we now have a "dual" level membership scheme - Full members pay an annual subscription, receiving various benefits - including access to our publications library, Magazine by post, Forum, discounted events etc and Supporters don't! What we'd like to do is try to convert all those Supporters to Members during this year, as there are almost 2000 Supporters on our database! Supporters include people who have been a member in the past, and their subscription lapsed, or maybe they initially contacted us, received information, but didn't convert at that time to a Full Member. You can check the benefits of being a Member over a Supporter at http://www.cmt.org.uk/benefits-of-joining.php Think of all the extra things we could do if every Supporter contributed what amounts to 42p per week to our funds, by paying for Full Membership - which is only £22 per  year, and can be paid monthly or annually (or £27 for Families). 2000 extra memberships would raise £44,000 - more than enough to fund our next major project - a specific e-learning module about CMT, through the British Medical Journal. Don't we all wish our GP knew more about CMT? Well, converting from a Supporter to a Full Member is just one way to help us do that! If you're not sure about your membership status, just drop me an email. You can pay by cheque, credit or debit card, recurring PayPal payment and preferably, by Direct Debit - just go here to simply pay your Subscription - or ring us - we can deal with all of this over the phone! Thank you!! (PS - did you know? New members who pay also get a voucher to allow them a 15% discount in our webshop - and not just once, either, but whenever they want something!!) |
Scottish Conference
We're making our biennial trek up to Scotland again in September, and hope we'll see you there! The date for your diary is 13th September, at our usual venue of the Hilton Hotel, Strathclyde, Bellshill.
Speakers confirmed are Dr Lance Sloan, a rehabilitation consultant, Mr Senthil Kumar, an orthopaedic surgeon and a podiatrist called Sarah (sorry, I haven't got her full name to hand yet!), who is excellent at all things relating to feet and shoes!
If you're north of the border, or even just a bit south, if you like - please do come along. We're trialling online registration of this event to bring u s into the 21st century - you can find all the details at http://www.cmt.org.uk/Scottish-Conference.php and that includes a link to the booking facility.
We'll be writing all Scottish members in the next couple of weeks to give you all the necessary details!
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Message from Nichola.... Corporate Fundraising It has just been over a month since starting my post as Fundraising Manager at CMT United Kingdom and time has gone by so quickly planning for the future!!! I am working on developing a number of different fundraising streams and to start with one of my main focuses is driving CORPORATE FUNDRAISING!!! As a National Charity it is imperative to have awareness and a presence in the corporate world all over the UK, which in turn will generate more awareness and raise vital funds. I would like to give a BIG shout out to anybody who works for companies or has contacts with businesses who maybe run 'Charity of the Year' schemes, run events which raise money for charity, sponsorship or any other ways they provide support. Please get in touch with me to discuss the potential as your connection with the business can help strengthen the cause and generate some fantastic contacts and support in the future as Together We  Are Stronger! Additionally here are just a few other ways you can help corporate fundraise: - Get your employees or colleagues involved......cake sales, quizzes and raffles these are just some examples.
- Can your company match funds raised by the staff from challenge events?
- Payroll Giving - is a simple tax effective way of demonstrating commitment to charities that employees hold close to their hearts.
- Recruit participants to take part in challenge events on behalf of CMT United Kingdom
For further ideas please visit our Corporate Fundraising Page on our website: http://www.cmt.org.uk/corporate-involvement.php PLEASE get in touch with your business contacts on 01202 432048 or email: nichola@cmtuk.org.uk |
Spring seems to have sprung at last, there's lovely sunshine down in Bournemouth today (that'll jinx it!).
Take care, everyone - and don't forget, if you need our help with anything, you only have to ask. I can't promise that we can fix the NHS or make your CMT go away.... but we can listen, if nothing else!
Karen
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 Click here to make donation using your PayPal account, and help us achieve our dreams
Join our Community at CMT United Kingdom So what are the benefits of joining us? Supporters get: - Three editions of our magazine. ComMenT, per year attached to an email like this one
- 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
MEMBERS GET ALL THAT PLUS.... - Access to our members only section of the CMT website with its huge library of publications and the Members' Forum
- Alert cards for yourself and close family members
- Discounted attendance at our Annual Conference - next one on 5th April at the Hilton Hotel, Swindon, Wiltshire. And you get the right to vote at the Annual General Meeting.
- ComMenT by post (if preferred), and access to 10 year's worth of back-numbers.
And all this for only £22per year, or £27 for families! |
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Contact:
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Karen Butcher, Chief Operating Officer
info@cmtuk.org.uk | 01202 432048
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