We hope that you and your family are well in this difficult time.
The COVID-19 pandemic is having a catastrophic effect on UK charities leading to an estimated loss of £4 billion for the sector. Charities depend on income from fundraising events and thousands have been cancelled or postponed. For many charities, including MS-UK, the 26 April would have been the biggest fundraising day of the year thanks to the Virgin Money London Marathon, the world’s biggest one-day fundraising event which raised £66.4 million for charities in 2019.
In response, the UK’s mass participation sports event industry has come together to create The 2.6 Challenge, a nationwide fundraising campaign to Save the UK’s Charities. They are inviting the public to dream up an activity based around the numbers 2.6 or 26 and fundraise or donate to charities like us. It would be wonderful to have your support.
How can you help?
Please find more information about The 2.6 Challenge by visiting www.twopointsixchallenge.co.uk.
Thank you for continuing to support us, every penny raised will really make a difference to the lives of people living with multiple sclerosis.
Jill Purcell, MS-UK Fundraising Manager
MS-UK is using MS Awareness Week to tell people the impact multiple sclerosis (MS) can have on mental health by sharing videos and blogs from its counselling service.
We offer the only dedicated telephone counselling service for people with MS in the UK and are currently crowdfunding to pilot a scheme of video counselling, which the MS community has told us would be even more beneficial.
During MS Awareness Week, which runs from 20-26 April, MS-UK will be posting vlogs from our trained counsellors on our YouTube channel and social media. They will cover topics such as how to deal with negative thoughts, low mood and anxiety, and managing uncertainty when living with a condition like MS.
We are encouraging everyone to get involved by sharing the content on social media and using the hashtags #MSAW2020 and #MindOverMS
On person who benefitted from MS-UK’s counselling service is Vicki who, eight months after her diagnosis, was struggling to cope. “I had so much pent-up anger and didn’t know what the future held,” she explains. “Counselling from MS-UK really helped me to communicate how I was feeling. It was very beneficial, but I think doing it via video would be even better, because you can see the other person’s body language and have a better connection with them.”
“Last year, 93 per cent of the people our counsellors worked with improved or maintained their mental and emotional health,” says Amy Woolf, CEO of MS-UK.
“NHS waiting lists for counselling can be up to 18 months, whereas we aim to keep this below 12 weeks. There are 90,000 people with MS in real financial hardship so it’s vital we raise funds to keep our services free or donation-based.”
We need your help!
We need your help! You can contribute to the crowdfunding campaign here and watch more of Vicky’s story – even if you can’t contribute financially, please share it on social media to help us get this vital service up and running to help people with MS live happier, healthier lives.
Having run the Virgin Money London Marathon in 2015 Samira Sharrif vowed to never to do it again, but here she is again and she explains why
In December 2019 I read an article on our work intranet looking for volunteers to enter a ballot for the 2020 Virgin Money London Marathon. This article seemed to be talking to me directly - it was playing on mind for days - so, I entered the ballot.
Later in December 2019 my husband and two children watched the film ‘Britany Runs a Marathon’. The movie was all about a woman who had no real purpose in life, but with sheer determination wanted to succeed in achieving something big!
I do have a purpose in life - but the connection I had with the film was the ‘sheer determination’ in doing something to make a big difference. So, as we celebrated the New Year I said to myself, “This is the year I exceed my own expectations and run the Virgin Money London Marathon”.
The work ballot was drawn, and I didn’t get a place…
I was very downhearted, which made me feel even more determined and that feeling of “I’m not going to give up just yet” was here to stay.
In the past, I have run for charities such as Cancer Research, Breast Cancer, Children with Disabilities and Protecting Children from Cruelty. All of these charities are about supporting people just like you and me - so my motto “make a difference” applies to all.
So, I thought of which charity I’d like to contact to make a real difference and multiple sclerosis (MS) was one I had been thinking about for a while for a few reasons. One of the reasons was the struggle an ex-manager had with his wife living with MS and imagining how life was for him and his daughter. The second was because of a relative whose brother lived with MS but unfortunately passed away.
I feel we take life for granted sometimes and whilst we are all here living and breathing we should all help raise awareness and support charities to find cures - you never know if you will need to rely on these charities for help yourself or for a loved one one day.
So, on Friday 17 January 2020, I rang MS-UK and asked if there was a place in the Virgin Money London Marathon and to my astonishment, Lucy from the MS-UK fundraising team said “Yes”! I felt very emotional and excited both at the same time. I had a great feeling about this!
On Saturday 18 January, regardless of whether I was accepted, I ran 5.5 miles at 7am. The feel-good factor kicked in and I had a gut feeling I was going to achieve my first goal of 2020.
On Monday 20 January Lucy called me and gave me the best news for 2020, I had been accepted to run the Virgin Money London Marathon in aid of MS-UK. I was absolutely delighted and accepted there and then!
Being a late entry, the challenge was on…
I set up my JustGiving page and reached out to all my contacts to donate on 21 January. My friend called me and said she really wanted to help me achieve my target and offered to host a luncheon for some of the ladies in the community, with a raffle and possible auction - we agreed a date in February.
I built my training plan and factored in two light runs on weekdays, with a longer run at the weekend. On track and on target! Off I went and ordered props to promote awareness and personalise the event to generate more excitement and enthusiasm.
By Wednesday 04 February I had reached my halfway mark of £1000, I was feeling good! The Hungry for Haleem Luncheon was scheduled for Friday 07 February. We raised a total of £586.50 with £10 entry, raffle and auction. Following this event, over the weekend a flurry of donations came through and I reached over £2,000. That’s three weeks into my challenge! However, I was determined to reach greater heights, so I organised a work raffle and raise £154.
Overwhelmingly my sister has also been raising funds for me a guess the number of sweets in a jar challenge at her workplace and raised another £102 added to my fundraising total to support MS-UK.
If you have been inspired by Samira’s story, please donate to her JustGiving page by clicking here.
MS-UK is a small national charity dedicated to supporting people affected by multiple sclerosis (MS) to live happier and healthier lives. We have always been proud to be an independent charity that is mainly funded by the support of the MS community. It is through fundraising events and donations that we have been able to run our services all these years. It is the generosity of those that truly understand what life with MS is like, that keeps our essential work going.
However, with all events now cancelled, so much of our income has dried up over-night. And this at a time that those people who were already feeling lonely or isolated, or struggling with their mental health, need us now even more.
Could you do something fun to raise money for MS-UK whilst you are at home? Our fundraising team have been working hard to create some fun ways you can help raise funds for MS-UK and stave off the boredom of lockdown at the same time! From sponsored head shaves and quizzes to an Ice-olation Challenge, gaming marathons and fun with the kids, we’ve got it covered. Check out our Fundraising From Home webpage and choose an activity for you and your family.
Or are you able to make a donation to keep our services open?
Every penny raised, really will make a difference.
Thank you so much for your support, I wish you and your loved ones well.
Amy Woolf, CEO of MS-UK
My wife’s grandmother, Marina Lamnisos lived with multiple sclerosis (MS) for many years before she sadly passed away in 2019. After the funeral, I decided that I wanted to raise money to help others affected by the condition and ensure they get the care they need.
I set my sights on a charity walk, but one with a difference. I recruited some friends who are all Reading FC fans and it was then that we decided, back in August 2019, that we would walk from the fulltime whistle of one match to the kick-off of a game the following Tuesday. We picked Reading’s home game against Stoke on the 14 March and their away game against Derby on the 17 March.
The walk from Reading to Derby would be roughly 120 miles in total. Initially, there were three of us who were going to complete the walk. However, one of our trios showed symptoms of illness and decided it was best not to partake. Furthermore given the current climate, unfortunately, both of the football games were cancelled. While this did dampen our spirits slightly going into the Saturday, we powered on as myself and my walking partner, Craig knew we were both raising money for good reasons.
We stayed overnight in hotels in Wallingford, Banbury and Nuneaton to complete the walk. On the first day, we walked the Thames path with the last three miles completed at dusk. Parts of the path had slightly flooded given the recent weather, which meant we got to the hotel a bit damp after six hours of walking.
The following days we left our hotels at 08:30am and arrived at the following location after dark. On route, we traipsed through some of the stunning English countryside particularly between Oxford and Banbury.
When we arrived after day three at our hotel and an advert came on for CR-UK (the charity that Craig was raising money for)* and it really hit home to us exactly why we were raising money and motivated us to complete the last leg of the journey. One particular highlight for us was on day four we stopped in a pub in Hinckley for breakfast where we were treated very kindly. The staff gave Craig an ice bucket for his feet as they could see he was struggling and a man came over to chat to us and decided after listening to our story to donate to our charities. We were extremely grateful for this act of kindness. We arrived in Derby at roughly 5pm on Tuesday 17 March, it was a shame that there was no football to watch but we were relieved to have completed the Challenge for a worthy cause!
At the time of writing, we have raised an incredible £1,506 with gift aid for our causes. We hope this money can make a real difference. Our charity page is still open until June for donations so if you’d like to donate or hear more about why we did this walk please click the link below
If you've been inspired by Hugh's story and would like to create your own challenge to raise money for MS-UK, contact Lucy who will be happy to support you every step of the way. Email email@example.com today!
We’ve had a lot of questions about work here on the helpline. Some examples include
People with a diagnosis of MS are within the section of society classed as ‘vulnerable’ under recent coronavirus government guidelines. It is very important that all those who are vulnerable strictly adhere to the social distancing practices and follow the stay at home guidance, working from home where possible.
Those with MS who are considered to be ‘extremely vulnerable’ or at much higher risk will need to be shielding for 12 weeks. This is where people will be strongly advised to not leave their home for at least the next three months.
The extremely vulnerable will have received a letter, text or phone call from the government informing them of the shielding procedure. If you haven’t been contacted and feel you are in this category please get in touch with your GP or MS team as soon as possible.
The extremely vulnerable includes those who
You may be recommended to follow the shielding procedure if your MS team feel it is necessary and are concerned about your risk.
People with a diagnosis of MS are protected by the Equality Act from the date of diagnosis and, in the eyes of the law, will be considered to have a disability. This means that employers should make reasonable adjustments to a role or a working environment. We strongly suggest that you have a conversation with your employer (and any occupational health services) about your MS and ask that they follow social distancing practices to allow the strictest possible adherence to the social distancing guidelines.
If you are in the extremely vulnerable group and need to shield, you should speak to your employer about whether they plan to place staff on furlough. This is where your employer can pay 80 per cent of your wages through the Coronavirus Job Retention Scheme, which your employer can then claim back from the government. You employer can also make a choice whether to pay you the remaining 20 per cent of your salary.
The government has specific guidelines for employers which can be found at this link https://www.gov.uk/government/publications/guidance-to-employers-and-businesses-about-covid-19/covid-19-guidance-for-employees
For people who are not able to work from home, are in key worker roles, or involved in manufacturing, or food retail, ACAS (the Advisory, Conciliation and Arbitration Service) has some information that will likely be useful.
They say on their website that ‘Employers must be especially careful and take extra steps for anyone in their workforce who is in a vulnerable group’.
ACAS go on to say ‘If an employee is [still] being asked to go out to work and they believe they're at a higher risk, it's important they talk to their employer. If they can show that their work or travel to work stops them from social distancing, they should tell their employer that they need to follow government advice and stay at home’.
For ACAS’s specific information for employees who are vulnerable or in a high risk group, please see this link www.acas.org.uk/coronavirus/vulnerable-people-and-high-risk
Specific guidance is being developed for those who work in healthcare and we will share this once it is available. However, those with compromised immune systems should make it known to their line manager as soon as possible to discuss the best course of action.
Being connected with others and gaining some peer support can be especially useful at a time like this. The Facebook group ‘MS & Work’ was set up by Rebecca Armstrong, who is a HR professional who also lives with MS. The group is a closed group meaning that if someone posts within it, it will not appear ‘publicly’ to Facebook friends and connections. The group is very supportive. Rebecca is also a regular contributor to MS-UK’s New Pathways magazine.
The Facebook group is intended to offer support and help to people with MS who are experiencing employment difficulties. Rebecca gives all support freely. She recently did a question and answer session within the group specifically about MS, work and the coronavirus. As a caveat Rebecca suggests that people should always obtain legal advice if they are ever in doubt over the support given.
Our helpline is still operating and is available. Please email us in the first instance as we will likely be able to reply to you more quickly than by telephone. Our email is firstname.lastname@example.org We will do our best to get back to you as soon as we can and within three working days.
Keep safe all,
Laura and Ryan,
MS-UK Helpline team