We had a great time at the Virgin Money London Marathon Expo last week and our beloved mascot Myles certainly enjoyed himself!
Big thank you to all of the charities and organisations that said hello to Myles!
Don’t forget you can now register for the 2017 Virgin Money London Marathon on our website. Our Gold Bond places are limited, so don’t forget to get your entry in!
Head of Fundraising
Last year we ran the brilliant #PurplePants campaign, and we carried out a survey afterwards to see what you thought about it. Many of you said you wish you could have donated to MS-UK during the week.
MS Awareness Week, for us, is all about spreading a positive message, as we really want to support people affected by multiple sclerosis to make the most of today and live life to the full.
However, I understand not everyone likes shouting from the rooftops. So, this year we have set up a special JustGiving page for our Year of the Bear campaign. You can donate all year round to MS-UK, and we’ll be telling people all about the page whenever we run a campaign.
Thanks for giving us your feedback after MS Awareness Week last year, we’ll definitely be asking for it again this year!
Marketing Manager, MS-UK
Here at the MS-UK Helpline we’ve noticed that we have had a lot more calls lately from clients about Personal Independence Payment (PIP). This is not entirely unexpected as PIP has been in the news a lot lately. There has been confusion over proposed changes to PIP assessments and the fact that the government is now not going to implement their proposed change to the benefit after all.
We’ve also noticed that many people who have been receiving Disability Living Allowance (DLA) on ‘lifetime’ awards are only now receiving letters from the Department for Work and Pensions (DWP) inviting them to claim Personal Independence Payment (PIP).
We thought that we would share with blog readers some of the useful tools and guides we use when helping clients.
One of the great resources that we use when helping clients with welfare rights issues is the ‘Disability Rights Handbook’ published by Disability Rights UK. Disability Rights UK is a national charity run by and for people with lived experience of disability or health conditions. MS-UK are a member organisation working with Disability Rights UK, meaning that along with over three hundred and twenty other organisations we can access their high level benefits support service. This means that if we cannot answer a client’s benefits enquiry ourselves we can tap into the expertise that is needed.
The Disability Rights Handbook is updated yearly and is a detailed guide to both disability benefits and independent living. Although available to the public, the Handbook is mainly used by advisors as it can be quite complicated to read due to its thorough and incredibly detailed content. The Handbook is an essential tool for our Helpline team!
Disability Rights UK also produce some really useful factsheets and guides which are all listed and available to download from their website. One of the guides we have been sharing with clients a lot recently is: Disability Rights UK Factsheet ‘F60’ – ‘Personal Independence Payment – free guide to making a claim’. A hard copy of the guide can be ordered from Disability Rights UK’s shop or downloaded for free as a word document.
One of the things the Helpline team really like about this guide is that it makes suggestions for people with fluctuating conditions to keep and submit a diary with their PIP claim and it even gives an example diary of someone with MS, which is really useful.
If PIP affects you, we hope that by knowing about these resources it helps you to be able to be as informed as you can be. If you need support, we want you to know that the Helpline team is here if you need us. The Helpline team all have benefits training and are able to give quality information and support to people contacting our service. We can spend time you and support you to understand the processes involved and to be able to articulate you needs to the DWP in a way that we hope will help you gain the right level of benefits for your personal circumstances.
Call 0800 783 0518
Email us email@example.com
Maybe next year you’ll be one of them! Already the date is set for Sunday 23 April 2017 and you can apply now to run for MS-UK. It’s tough, you’ll work hard, but there is no feeling in the world like it when you pass that finish line!
Check out our video and get inspired to run the marathon, it will be one of the biggest achievements of your life, and all for a good cause!
To celebrate this years MS Awareness Week, I am proud to present our new booklet for people newly diagnosed with multiple sclerosis.
MS-UK believes that we must listen to the voices of people affected by MS to shape our information and support as it is these people that bring us perspectives that no one else can give. So this booklet is packed full of quotes from real people living with MS.
I hope this booklet will give people the courage to learn more about the condition, when they are ready, and also the choices that are available to them, so they can feel empowered to take back some of the control they may at first feel they have lost.
Thank you for helping us spread a positive message this MS Awareness Week.
So, it is finally here! Hope everyone has a great week spreading awareness of multiple sclerosis…
We are asking people to take selfies and to post these with our Twibbon on your social media channels like Twitter, Facebook and Instagram.
MS-UK believes that having MS shouldn’t be a barrier to a happy life, and we want to celebrate MS Awareness Week with this positive message, and some laughs along the way.
How to get involved…
1. Take a selfie. I recommend grabbing your favourite teddy bear or wearing something purple!
2. Add a Twibbon to your profile picture. This year I have my very own Twibbon, all you need to do is add it by visitingtwibbon.com/Support/smileswithmyles
3. Post your selfie on Twitter, Facebook and Instagram between 25 April and 29 April to celebrate MS Awareness Week. Use the hashtag #SmileswithMyles to show your support!
4. Don’t forget to nominate your friends and family to take their own selfie and keep the message going!
If you want to support MS-UK during MS Awareness Week but fancy giving instead of taking a selfie, you can donate to MS-UK by visiting the Myles JustGiving campaign page! Every penny will go towards helping MS-UK continue our vital work supporting anyone affected by multiple sclerosis.
All week at the Virgin Money London Marathon Expo we have been meeting our amazing runners and chatting to them about their motivation. On our stand, many signed our runners wall with messages of hope, inspiration and courage.
You can now check out the photo album on Facebook of all of our runner messages…I hope you enjoy reading them, and they may even give you the appetite to join our marathon team for 2017!
We will be live tweeting all day tomorrow at the marathon, and wish everyone running a lot of luck! You can follow us on Twitter
Here’s to the #oneinamillion runners taking part tomorrow, you can do it!
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Head of Fundraising
As MS Awareness Week begins on Monday, I just wanted to let you know how you can support our campaign during the week. We really want to spread a positive message, and we’re asking everyone to post a selfie to recognise MS Awareness Week – I can’t wait to share mine too!
So, here’s how you can get involved next week…
I really hope you’ll join me for some fun awareness raising during the week, and don’t forget to follow me on Instagram so you can check out my very own #SmileswithMyles selfies!
Tom Pope, MS-UK fundraiser and all-round adventurer, has just returned from the Marathon Des Sables, dubbed ‘the toughest footrace on earth
In this blog, he updates us on what the experience was like and why he took part in such a challenging race for MS-UK…
The Marathon Des Sables is absolutely everything that you expect and want it to be. It pushes you to the edge of your physical and mental limits and forces you to draw on a level of resilience and strength that you want to challenge yourself to recognise within. It awakens the characteristics and attributes that you sign up to unearth and gives you no other alternative other than to find a way to keep going within yourself. It is every bit as punishing, relentless and testing as it is rewarding, gratifying and euphoric. I have created memories, friends and experiences that will last an entire lifetime and have joined an exclusive club that I never thought possible. On top of this, I have finished 79th and have smashed my silent ambition to place in the top 150 of 1200 runners from all corners of the globe.
Despite the difficulty of many of the stages, particularly the long day of 84km, I always had my motivation and rationale to draw on. In this sense, I actually felt quite lucky and, in a strange way, almost protected. Through tough times I thought to my family, my friends and the warm and supportive messages I had received to carry me through.
I thought to the struggle that my mum had experienced with her diagnosis in 2004 and the courage and strength she had shown until her passing 10 years later. I was able to draw on a sense of perspective that kept me going and think of her lovely smile and the looks she used to give me to keep me motivated and strong until the finish. I thought to the sheer volume of donations on the justgiving page and the way in which mum would have reacted when I told her how much had been raised. I felt that she was playing a huge part in the desert with a number of things going my way – fortuitously having a doctor in the tent and then experiencing rare breezes that ran through the vast, desolate valleys to cool us down when the sun was at its highest point.
My mum, my beautiful girlfriend, my family, my friends and everyone at MS-UK were with me for the whole experience and I couldn’t have done this without them. Thank you so, so, so much for the support.
It has already got me thinking about my next challenge……..; ) !!!
In the second of our Guest Blogs, Olivia, author of the Odd Pigeon Blog writes about caring for her Mother with MS.
Hello, my name is Olivia and I am 14. At just eight years old, I became a young carer for my mother, who has Multiple Sclerosis. I have two older brothers, but I am her main carer. Caring is undeniably difficult, it challenges even the smartest of people, in my experience I enjoy caring. I love my mother in every possible way, she is strong, caring, honest and an inspiration to so many people. My caring role has made our relationship the best it has ever been, we spend almost every moment we can together.
I think the most challenging part of caring is seeing your loved one in pain. On a bad day, all I wish to do is snuggle up together and squeeze the pain away. I want to take it from her, wish away the hurt, erase the bad memories and the daily dozen of medication. It baffles me, it always seems to be the good people that get dealt the worst fates.
The definition of a heroic person is someone who is admired for their courage, their achievements and most of all their noble qualities. Everyone has their own definition of a hero, my mother is my hero. She is inexplicably amazing, my only wish is to be half as brave and courageous, to hopefully one day teach my own children the valuable lessons she has taught me.
Caring for my mother on her bad days is a life lesson, it teaches you integrity, loyalty and how to love unconditionally. When caring gets hard, when you feel like you’re stressed beyond control, like you can’t breathe, the values you’ve been given can help get you through it, help you turn on the light when you’re in pitch darkness! Having motivation and the strength to stay positive is sometimes all you need to carry on.
My message through my blog, is that no one is alone, every carer has a voice.
Everyone can speak up, raise awareness for their experiences! I would like to raise the awareness of Multiple Sclerosis, try and help people to understand what life is like for a person with a degenerative illness.
For now I will leave you with a quote “The best thing to hold onto in life is each other” – Audrey Hepburn
For more of my blogs: Click here
All my love,
The odd pigeon. xx
Author of the Odd Pigeon Blog