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Meet Kylie, one of MS-UK's Community Champions!

Posted on: May 04 2021

Hi everyone, I’m Kylie, I’m 40 years old and I’ve recently applied to become an MS-UK Community Champion. My awesome friend (that I’ve only met because we both have MS and ours paths crossed) told me all about MS-UK and the great work that they do for people with multiple sclerosis (MS) and what it meant to be a Community Champion. Kylie Aggio.jpg

It’s going to be great to help raise funds and awareness. I also love meeting and talking to new people and it’s a role that has no pressure and stress attached to it, so it is perfect!! I’m very excited to be a part of #TeamPurple!

So, just a little bit about me. I was diagnosed with MS eight years ago. I had no idea that I had anything wrong with me until in the space of a few weeks I developed many symptoms of MS. It started with tingling in my fingertips, then my toes and just spread like wildfire from there. I consider myself to be very lucky as a few visits to the doctors, I was admitted to hospital where I remained for a week while I had intravenous steroids, an MRI, and a lumbar puncture. By the time I went to hospital, I could barely walk, bounced off of walls and couldn’t even hold a knife and fork anymore.

I came out with my diagnosis of MS at the end of that week and started a disease modifying drug just a few months later once funding came through. I know that other people’s diagnosis journeys to getting a diagnosis have been a lot longer, so I am grateful that it happened in the way that it did. I’m very much 'a glass half full' kind of girl, with a decent amount of stubbornness, so I worked hard on a long recovery when I got home. I have an amazing fiancé that helped me to get quite literally get back on my feet. I have permanent symptoms that remain and symptoms that constantly come and go but I’ve just learned to live in a different way. There are always ways around things. I wouldn’t change having MS because I’ve met the most fantastic people and it’s changed me in a very positive way. It made me realise that I had to cut stress out of my life as much as possible as it is absolutely my number one trigger for a relapse. It’s taught me that actually it’s okay to say no (still working on that!), and it’s also given me back my love of arts and crafts. Although MS can be hard and challenging at times, it can also bring great gifts with it.

If you'd like to find out more about becoming one of our Community Champions, click here or contact our Fundraising team on fundraising@ms-uk.org 

Team Purple Pups

Posted on: April 15 2021

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Cathy and Sue took part in the Big Purple Dog Walk for MS-UK, and raised over £400 with their team of pups and walkers. Cathy shares their story and the support they were able to give each other during the challenge. 

'After the success of Run Every Day in January 2021 for MS-UK, Sue our Run Together Leader and MS-UK ambassador asked if we would like to join in The Big Purple Dog Walk, and many of the Run Together members jumped at the chance to sign up. Some team members were really struggling through the dark gloomy months, on top of trying to cope with the stress of Covid. So, we put together Team Purple Pups. Our Purple Pups are called Idris, Padfoot, Widget, Stanley, Tala, Willow, Mav, Jess, Nelly, Hunter, Max, Holly, Blitz, Ozwold, Shadow, Poppy, Willow 2, Lenny and Winnie

Team Purple Pups did us proud, they had us out every day, rain or shine! To get out in the fresh air, even for a short walk is just the best cure if you are feeling a bit down, anxious or just want to clear your head! Some of the Purple Pup’s walked miles every day, some of the slightly older dogs could only manage a few miles a day, but together as a team the Purple Pup’s covered so much mileage and completed quite a few marathons!

The MS-UK challenges throughout lockdown have helped so may of our Run Together Purple Pup owners. The challenges have got us out and about and we have met up with other Run Together members and Purple Pup’s pups and has been a life saver for many. Sue and our Run Together members have looked out for each other since lockdown last year and provided support and encouragement to anyone struggling with the Covid situation and not being able to see their loved ones. They relied on our running family to get some of us through some very dark times.

A huge thanks goes to Sue Bennett, without her, none of these MS-UK challenges would have happened. Sue has looked after us all since the very first lockdown, with live videos on Facebook, our Purple WhatsApp group, arranging buddy up runs or walks and just being there to support her team members. Cathy Flynn Team Purple Pups.jpg Team Purple Pups thoroughly enjoyed the Big Purple walk and have raised £405 for MS-UK!'

Take part in the London Marathon Walk this September!

Posted on: April 13 2021

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Join #TeamPurple this September for a different kind of London Marathon, accessible for all! 

If you have always had your sights on completing a walking marathon, and you are up for a challenge, then maybe this is the event for you. The London Marathon Walk is your chance to conquer the capital with your friends, and with a fundraising target of just £100, you could do something amazing this year for MS-UK! 

Image.jpg The London Marathon Walk will take you on a unique route around our capital city, taking in world-famous sights and less well-known corners as you trace a 26-mile route through London.  This challenging day will see you setting off bright and early, and will take you through peaceful parks and alongside waterways, passing iconic landmarks including St Paul’s Cathedral, Big Ben, Buckingham Palace and the London Eye as you walk through the historic heart of the city. 

We would love to invite you to take part in this very special event for MS-UK, and complete your own kind of London Marathon! Guaranteed to be an achievement you will remember for a very long time, whilst making a difference to people affected by multiple sclerosis.

Sign up today and receive an MS-UK top to wear with pride! Contact Jackie in the fundraising team for more information on 01206 226500 

Register for the London Marathon Walk 

Why I became an MS-UK Community Champion

Posted on: April 12 2021

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"I have had multiple sclerosis (MS) now for nine years and very lucky that it is mild, and I can still work full time. When I received my diagnosis of MS it was not something new to me. My late mother also had MS and she was Primary Progressive, wheelchair bound, and my father was her full-time career. I have seen first-hand how unpredictable and horrible this disease is. 

Since my diagnosis I have been passionate about raising funds and awareness for MS and have done something for charity every year. I have climbed Snowdonia, walked 26 miles, walked 100 miles in a month and hosted a few of my own events too. In total I have raised over £8,000 for various MS charities throughout the year. I help at my hospital with my MS nurses and participate in a newly diagnosed day and talk to others about what I have been through. I also host a Facebook support group for women with MS, which is globally a huge success with nearly 25k members.

I want to continue helping as much as I can and with working full-time, I am so limited. So, to be able to help MS-UK by getting the name out there and raising vital funds for them by becoming a Community Champion, really touches my heart that I am helping others."

MS-UK's Community Champions distribute charity collection pots within their local area and maintain relationships with the venues that look after the collection tins. You can find out more about the role of a Community Champion by clicking here, or contact our Fundraising team on fundraising@ms-uk.org or call them on 01206 226500.

Six Marathons and MS

Posted on: March 25 2021

Andrea Chapa 2_0.jpgMy name is Andrea Chapa and I’m running the 2021 London Marathon for MS-UK. I hail from across the pond, but my story began in 2014 when I was studying abroad in Australia. Very early on during my summer term, I ended up at the hospital due to severe eye pain and partial blindness. I had an MRI done and some other tests when the doctors found spots in my brain. I still remember feeling alone and frozen in panic as I heard the doctor say ‘multiple sclerosis’ for the first time. The doctor said there wasn't enough evidence to fully diagnose but warned me that I could have more symptoms come up. But when? There was no way to know... 

The following year sent me into a whirlwind of emotions and I was constantly living with the thought of MS creeping up around the corner. A year later it arrived. I had just graduated from college and moved to Los Angeles to start my career when I woke up with the room spinning. Vertigo paired with my history of optic neuritis gave me the diagnosis. I have multiple sclerosis.

I didn't know what that meant at first. Like many people I went online and saw and read things I wish I hadn't. Wheelchairs, canes, loss of motor function, mystery symptoms, shorter lifespan... I was scared and felt lost. It’s a feeling that I do not wish on anyone, but what got me out of it was the immense support from my family and loved ones. After that, I started reaching out to other people in my position and we shared advice, stories, sadness, and hope.

In 2018, I decided to do something that, to me, felt absolutely impossible. I wanted to run the six World Major Marathons before I turned 30. I was never an active person, even before MS, but I knew I needed to take control of my life. That year I ran New York Marathon and raised over $7,000 for the MS Society. I ran the Berlin Marathon in 2019 and was set to run the Chicago one in 2020 before the pandemic cancelled that.

This year, I’m taking on the London Marathon and I’ll have a partner to run with me! My girlfriend, Marette has been by my side since my diagnosis and has helped me immensely. I convinced her to take on London (our favourite city!) with me and we are both proud to be raising money for this amazing organisation. I truly believe that MS is not something one should have to face on their own and I feel honoured to represent an organization that is there to help out. Andrea Chapa  .jpg

Andrea's fundraising page

Marette's fundraising page 

"Patsy that got us all through it, no matter what she was facing"

Posted on: March 17 2021

In July 2021, I am taking on The National 3 Peaks Challenge in aid of MS-UK.

These are the three highest peaks in England, Scotland and Wales. Considered one of Britain’s toughest outdoor challenges, the National 3 Peaks Challenge takes in the dizzy heights of Ben Nevis (1,344m), Scafell Pike (978m) and Snowdon (1,085m). Over the course of two days, we will trek around 26 miles and ascend to a total height of almost 3,000m! Connor Peebles FOTM.jpg

I continue to give myself these challenges as my sister Patsy was diagnosed with MS at an early age of just 14. This had a tremendous impact on her and also my family. Seeing my family crumble around me at the time of Patsy’s diagnosis was just heart breaking. It was Patsy that got us all through it, no matter what she was facing and the pain she was in, she smiled her way through it.

Patsy inspires me to push myself to the limits in all aspects of my life. She’s just purely amazing. I will continue to support the charities that helped Patsy throughout her MS Journey as without the brilliant work that they do, Patsy wouldn’t be where she is today and for that, I will always be very thankful. I wish we knew about MS-UK when Patsy first got diagnosed.

Since December 2020, I have raised over £2,200 for MS-UK and over £7,000 for different MS Charities. This year has been the toughest yet as I have had to fundraise through the pandemic. I was determined to reach my target so just had to think outside the box!

Most of my fundraising at this time has been done over social media and Zoom. I raised £700 through selling lucky numbers and football cards for £10 each. Half of the money went to the winner and the rest of the money donated to MS-UK

Raffle – I contacted friends/family/colleagues/anyone that I could possibly speak to and asked if anyone could donate a prize to his raffle. The items donated included unwanted gifts and presents, along with some very generous donations such as a running machine! The raffle was done online, with ticket donations being made to the fundraising page and pictures of the prizes being shared on his social media.

Online quizzes – This is a great way to raise a quick £50 or £60. This can be done via zoom one evening with some friends and family and will bump up your fundraising nicely. Patsy Peebles.jpg

Bingo – This is great to do with your colleagues, and again can be done online while you are still working remotely (speak to your workplace and see if they will help you to organise something with your colleagues!)

An Incentive to reach a target – I came up with a wacky idea to reach £1,500 with my fundraising. I promised to complete a run dressed in a dress, wig and makeup if his total reached £1,500 by a certain date. The sponsors came flooding in and the outfit is now being decided! (I will completing this run before MS Awareness week!)

Thank you so much to everyone that continues to support Patsy and my family. It’s very moving that even through the pandemic, donations have been made. 

I am absolutely honoured to be Patsy’s brother and I will continue to spend my life fighting for hers. 

If you would like to make a donation to my fundraising page I would be very grateful:

Connor's fundraising page 

 

Hi, I’m Klaus

Posted on: March 15 2021

Verity and her dog Klaus are part of #TeamPaws and are raising money for MS-UK with the Big Purple Dog Walk. Find out how you can get involved hereVerity and Cat.jpg

Hi, I'm Klaus. I’m a two-year-old Jack Russell. My mum, Verity adopted me at the end of December. She says I’m going to have a job in her hair studio, The Art House and make lots of new friends. My job will be to meet and greet, provide in-salon entertainment and snoot ‘boops’. Mum’s job is to make beautiful rainbow hair. I haven’t started my new job yet, because the man at Number 10 says we have to stay closed for a while to stop people getting sick. But we didn’t want to get bored, so mum has been teaching me some tricks and how to mind my paws and Qs.

Because of lockdown, I haven’t met many new people yet, but I have a few friends already. I have a friend called Dolly, we haven’t met in-person, but we FaceTime a lot. She’s a salon pup too, but she also has another job. Her job is to take care of her mum, who is called Verity like mine. Verity was diagnosed with multiple sclerosis (MS) in May last year, after over a year of problems and ‘owies’ that ended up with her going blind in one eye. Dolly came along when Verity started her treatment to help provide emotional support and a fun distraction, she’s a good girl.

I’ve got an aunty Cat too. She’s lovely and has rainbow hair and takes me on nice walks with mum. Her mum, Ann, is poorly with MS too. She’s had it for a number of years, uses a wheelchair and has carers that come to visit. Aunty Cat has spent most of her life helping Ann. It makes me sad that MS stops humans from running, jumping and playing - they’re my favourite things!

My mum helped me out when I needed a human, so I’d like to pay it forward and help some humans. Verity and Dolly.jpg

Aunty Cat told me about the Big Purple Dog Walk, where I get to do cool things to raise money for humans, like Verity and Ann. So, I shouted and did the ‘zoomies’ until mum said we could do it (which didn’t take long). We are trying to raise £500 for MS-UK by the end of March. 

I’m only a little pup, with little legs, so I can’t do a marathon, but I do like walking and I’m a good boy with my tricks. So, I’m doing two things, I’m doing a trick every day of March. That’s 31 tricks in 31 days. Mum is videoing me and putting them on her Facebook and Instagram @verityclarkehair. She said lots of people have written nice comments about me and donated money. Does this mean I’m famous now? 

When you read this, I’ll have started the second half of my challenge too. There’s a statue of a brown terrier in Battersea Park, about 63 miles from our house, called The Brown Dog Statue. If I had fingers, I’d look it up online, but mum says it’s in memory of dogs who were vivisected and that lots of people care about it. I’m a brown terrier too, so I’d like to go and see it and pay my respects. We aren’t allowed to leave Colchester at the moment, so I can’t go for real, but I’m going to pretend. My little legs can’t walk 63 miles all at once, so I’m going to walk three to four miles a day until I get there. Aunty Cat is going to come too!

My snazzy MS-UK bandana came in the post and I get so excited to put it on when mum gets it out of the cupboard. I’m having so much fun learning new tricks, and I’m super looking forward to starting my walking mission. I hope I can do Dolly, Verity, Ann and everyone at MS-UK proud. Anne and Ozzie.jpg

I’m halfway to my £500 goal already, but if you’d like to sponsor me and help me get all the way there, there’s a little website you can visit to donate and check out my progress, click the button below. 

See Klaus' fundraising progress 

Thank you for reading my story. Ooop, got to go, there’s a squirrel in the garden! Bye!

Ibi and Aria for the Big Purple Dog Walk

Posted on: March 12 2021

The Big Purple Dog Walk is our latest virtual fundraising event happening throughout March to raise money for MS-UK. Here, Ibi shares her story about how multiple sclerosis (MS) has impacted her life and why this is the fundraising event for them. 

When I first saw the Big Purple Dog Walk fundraising challenge, I really couldn’t believe how perfect it was for me! I have a dog, I have MS and purple is my favorite colour! I told my family about it and, with much excitement, we signed up our little Aria within minutes. Ibi and Aria.jpg

I was officially diagnosed with MS in 2009, a few months after the birth of my youngest son Daniel. In retrospect though, I started experiencing symptoms many years before, which were exacerbated when my eldest son Jonathan was born in 2005. Unfortunately, during the last 15 years I have deteriorated quite markedly and have had to adjust to the devastating impact MS has had on my physical and mental wellbeing. Sadly, I had to stop working nearly three years ago which is when we decided to finally get a dog. After researching which breeds didn’t need too much exercise, were intelligent and didn’t shed too much – we settled on a Norfolk Terrier and eventually welcomed Aria to our home. 

Aria has helped me adjust to my life at home and has brought so much love and joy into all our lives. The boys take her for her daily walk but, being teenagers, they complain incessantly. That’s when I had the brilliant idea (if I do say so myself) to challenge them with the task of taking her without complaining for the whole month! They are usually very good at helping out and have been registered young carers for the past five years, nonetheless, the Big Purple Dog Walk challenge has given them extra motivation, while raising money for MS-UK.       

So far, we have been blown away by the support we have received from family, friends and even total strangers. They boys ask me every morning “how much have we raised?” and are so determined and driven to carry out the Big Purple Dog Walk fundraising challenge. Aria also looks totally adorable in her MS-UK bandana and gets adoring looks whilst out and about.

Ibi and Aria's fundraising page

If you would like to fundraise for MS-UK with or without your dog, then get in touch today on 01206 226500

MS, me and Juke makes three

Posted on: March 12 2021

MS-UK's Big Purple Dog Walk fundraiser is in full swing, with thousands and pounds raised so far. One of our fundraisers Zoe, shares how Juke her seven-month-old crossbreed has changed her life and her relationship with multiple sclerosis (MS). 

Getting a dog has always been part of my life plan. Being diagnosed with MS was not. I received the diagnosis in 2018 and like everyone with MS, the journey has not been a smooth one. In the last two years I’ve walked 10km for a charity walk and I’ve been unable to get out of bed; I’ve experienced extreme joy and I have also suffered from deep depression. My MS experience has never felt stable, every morning I would wake up not knowing what my life would look like. Zoe Deal - Juke.jpg

Lockdown has not been kind on my mobility. I spent the first two months of lockdown shielding in my second floor flat and unsurprisingly, it was extremely difficult to motivate myself to do any exercise. I had a mat and did some stretching and pilates, but nothing that really got me moving. When I was finally given the go ahead to go outside for some exercise, I would experience extreme pain while walking. At times the pain was so intense I became scared of going out on my own in case I passed out from the pain or was simply unable to get home. So I stayed inside, or only went out with my partner or while on the phone with my mum. In October 2020, my partner and I moved into our new house which opened the door for the only missing piece from my life, a dog.

Our wonderful seven-month old crossbreed, Juke also had a tumultuous start in life. He is a rescue dog from Romania who was found in a bag with his littermates after being thrown in a river. He was taken in by some kind-hearted people and looked after until he was old enough to travel to the UK.

We bonded from the moment he was placed in my arms, it truly felt like we came to each other at the right place and time. He trusted me implicitly from the beginning and I have made it my mission to give him the best life possible. Dogs need to be walked. This is a basic requirement that needs to be met. So, we walk. We walk every day no matter the weather and no matter how I’m feeling. And I can do it because I’m doing it for him. We may do a six mile walk round a country estate, or we might do a 10-minute walk round my estate, but we always walk. Zoe Deal and Juke together.jpg

Juke and I are taking part in the Big Purple Dog Walk partly to raise money for this amazing charity, but also to see how much we can achieve together. We are loving finding new places to walk this month and can’t wait to see where the rest of the month takes us. 

I always knew that having a dog would change my life for the better, but I had no idea how much having Juke would enrich my life. He gives me the confidence to go out and walk around my new home, no matter how slowly we might have to go at times. He’s always happy to go out, which rubs off on me and instead of fearing the pain that might happen, I find myself looking forward to the joy that will happen.

When I wake up in the morning now, I still don’t know what my life looks like. My MS experience is still unpredictable and difficult, but as long as I have Juke in my life, I know everything will be okay.

Introducing Molly, our new Fundraising Assistant

Posted on: March 10 2021

Hello, I’m Molly, the new Fundraising Assistant. I am really excited to be part of the MS-UK team! Molly  .jpg

My role is to provide administrative support to the Fundraising team and support general fundraising activities. Also, to assist the fundraising manager with researching new initiatives and managing projects including our lottery and legacy campaigns.  

I have always loved the idea of working for a charity and working with like-minded people. My charity journey started when I worked for the Essex & Herts Air Ambulance, as a Fundraising Volunteer Administrator for just over a year. Since working for both charities I have found it to be really rewarding with a real sense of fulfilment. I love the variation of the role and working with community groups, individuals, and companies around the country. It is a privilege and great fun working for MS-UK, no day is ever the same. 

I am really looking forward to getting to know you all and hearing your stories.

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