This winter at MS-UK we are encouraging you to host your own Festive Frolic to help us fundraise for our services!
What is a Festive Frolic you say?
Well, it could be anything! Maybe a get together with mulled wine and mince pies, a bag pack at your local supermarket or even a collection on your local high street. As long as you are sharing in the festivities, it really is up to you!
Now this is where the fun bit comes in! If you register your Festive Frolic before 31 October, we will send you your own personalised goody bag! Filled with lots of lovely treats, from a mini Myles bear to balloons, your goody bag will also include all the info you need to help you organise your Frolic!
Alternatively, you can get in touch with me by email on Nicholas@ms-uk.org or phone me on 01206 226500 and I can send you your very own goody bag!
I’m really looking forward to hearing about all of your great Festive Frolics so don’t forget to get in touch and send me some pictures of your events!
My name is Diana, and I am new to MS-UK! I have recently joined as Head of Services, and this is my first blog, so I hope you enjoy it…
This week I went to the Headway Suffolk Neuro Conference to hear some outstanding speakers including Professor Stephen Hawking. Despite initial reports that he would not make it due to ill health he made a great effort to attend the event to the delight of everyone there. There was a real sense of anticipation as we heard that the Professor was in the building.
Professor Stephen Hawking takes the stage
This man is a true inspiration, at the age of 75 (on Monday 10 October) he is still working full time whilst living with motor neurone disease. Professor Hawking spoke of his journey from initial testing to diagnosis and the challenges that he has had to face since. He continues to defy medics and despite being told in 1962 that he would not survive two years he considers himself lucky and concentrates on the things he can do rather than things he can’t. He feels lucky to have had his three children and considers them to be his greatest achievement. What a great sense of humour he has too!
To see for yourself what he had to say visit the Headway Suffolk website. His next ambition is to travel in space with Richard Branson’s project.
Professor Trevor Powell, a Consultant Clinical Neuropsychologist from Berkshire Healthcare NHS Trust, spoke about post traumatic brain regrowth which was really interesting and something I hadn’t heard of before. Understanding how brain trauma effects individuals differently and how people react and cope with this in different ways and how some can draw strength from it.
Dr Chowdhury from Ipswich Hospital spoke of developments in the world of stroke and the passion and commitment to enable patients to get all possible treatments. He clearly explained the importance of early referral to specialist stroke units to get the best possible outcomes.
It was good to hear about the work that Headway Suffolk do too – particularly the Brainy Dogs – and their desire to fundraise for a housing project in order to respond to the needs of their service users.
It was a great day out that was attended by over 700 people, that certainly caused the staff at BT Adasatral Park a logistical nightmare with parking, security and catering and caused tailbacks on the A14. The opportunity to see Professor Hawking – quite possibly the most intelligent man on the planet – certainly drew the crowds!
It was a great event, and one I really enjoyed attending,
Head of Services
In September I visited the Suffolk Oxygen Therapy Centre in Great Blakenham where they held their open day to celebrate the purchase of their new building.
Currently they operate out of a porta cabin but are moving into a large warehouse with two floors which will give them more room for two oxygen units, and the upstairs they have room to convert one area into three therapy rooms and the other into an office.
It was also very enlightening for me personally to see how the oxygen units work and the benefits this has on the lives of people affected by MS. I spoke with many of their clients who said they felt energised after coming out of the chamber and were able to be very active for the rest of the day without feeling tired.
Many people visited for the day and there was a good atmosphere with a tombola and raffle.
MS-UK had a stand which was situated in the main area next to the two large tables full of homemade cakes and jam…yummy!
It was a busy day with lots of enquiries about Josephs Court and lots of people took leaflets about our work.
Centre Manager, Josephs Court
In this guest blog, Christian recounts visiting MS Life, the largest event for MSers, organised by the MS Society…
So MS life???? Firstly not my first time at the excel but I’m still in awe of the building, it’s enormous. As a venue I thought it was good and easy for me to get to
I was excited but not sure why, I had heard bits of previous events in Manchester but didn’t really know what to expect and the scale of it all.
The vast array of stalls showcasing the latest mobility aids, activities, talks and MS charities were amazing. I took part in a wheelchair dancing class which erm is not me, I had no rhythm before MS and following progression it didn’t trade me with any silky moves. This is a brilliant way to get you exercising in a fun way, I may of looked silly but who cares?
The talks I sat in on were about research and future treatments particularly for progressive MS, very exciting stuff.
More importantly than all the information though was the overwhelming feeling of community, people I’d never met, people I knew only from Facebook/Twitter and all the support staff. It was brilliant to spend time and talk to people who just get it. I will be back (that’s not a menacing Arnie I will be back either). Until next time,
It’s that time of year again when we launch our Winter Draw and this year is even better than ever before!
There are some fantastic prizes to be won with first prize being £1000 cash, second prize an iPad Air 2 and then five runners up prizes of £50 M&S vouchers!
To be in with a chance of winning one of these amazing prizes just in time for Christmas all you have to do is buy your tickets online. Tickets only cost £1 and you can buy as many as you like! The more times you enter the higher the chance of you winning!
I would also be hugely grateful to anyone that can sell or help place our Winter Draw tickets in their work place, local pubs, shops or social clubs. If you are interested all you have to do is send your counterfoils with your money to ‘FREEPOST MS-UK’ which saves you the hassle of collecting the brought tickets. If you would like to do this then please contact me and I will get some booklets sent out to you.
Please do remember to get permission from the manager of any venues first before leaving them on a counter!
Thank you for your support and good luck!
Community and Events Fundraiser
So, the latest issue of New Pathways has now landed, and it is an exciting one!
We have stories from Rio Paralympic Gold medallists Stephanie Millward and Kadeena Cox, a bumper section of news and research from ECTRIMS, plus articles all about pain management, an interview with Billy Talent drummer Aaron and sailing challenges in Turkey!
Our digital edition is also packed with videos and interactive content too – for a sneak peak, check out this video of Sardines Dance Collective performing at MS Life!
You can read the magazine instantly on your phone or tablet just by downloading the My MS-UK app, or subscribe for the paper or audio version via the MS-UK website.
However you read New Pathways, do send us your feedback and suggestions, and don’t forget to send your letters in too!
Everyone with an interest in rare diseases is encouraged to share their most beautiful and original images in the EURORDIS Photo Contest 2016. EURORDIS stands for the European Rare Diseases Organisation.
The deadline is 14 December, and there are three categories you can enter. If you’re not feeling snappy, don’t worry, you can still get involved – just visit their gallery to vote for your favourite photo instead!
Submit a photo to be in with a chance of winning a prize, and don’t forget to follow the Photo Contest with the hashtag #RareButReal2016