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Why I became an MS-UK Community Champion

Posted on: April 12 2021

Sally-Ann and Mum.jpg

"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.

Connect24 - Gaming for good

Posted on: April 12 2021

Connect 24 insta challenge grid.jpg#PlayforMSUK to have fun, boost cognition, and raise money for a brilliant cause!

Do you love playing video games? If not, it might be time to start! Let us tell you why.

Making memories

Gaming is possibly one of the most fun ways to actively boost your cognition. In 2015, a study at the University of California found that people who often played complex, three-dimensional video games performed better in hippocampus-related memory tasks when compared with people who either didn’t play at all, or played two-dimensional games. When people took up three-dimensional gaming for 30 minutes a day, the study found their memory was boosted.

Spatial visualisation

A study from the American Psychological Association found video gaming can give your spatial visualisation a huge boost – especially when the games involve shooting. It found gamers were better at judging the distance between objects, as well as rotating objects in their mind to judge how they would fit into a space. This is useful in everyday life – it might just help you to park your car better, or organise cupboards easier – anything that requires spatial awareness.

Making a decision

Playing a fast-paced game where you have to make quick choices can actually boost your decision-making ability in real life, too. A study from the University of Rochester found people who played fast-paced action games could make accurate choices quicker if than people that didn’t play, or those who only played slow-paced ones. So, pick up that controller and wave goodbye to decision fatigue!

So, how about boosting your cognition and raising money for a good cause at the same time? Enter Connect24, MS-UK’s first ever gaming challenge which is taking place on World MS Day over the bank holiday weekend 29-31 May 2021.

Simply get your friends and family to sponsor you, and challenge your pals to 24 hours of pure gaming – you’ll bag yourself a cool, exclusive MS-UK gaming cup when you sign up (stay hydrated!), and when you raise £100, you’ll get a Connect24 medal!

Want to Connect and play for MS-UK? Call the fundraising team on 01206 226500 to find out more or click here 

The Epstein-Barr virus and multiple sclerosis

Posted on: April 12 2021

me by hotel pool.jpgThe Epstein-Barr virus, which causes glandular fever, is a long-time suspected MS trigger. Ian Cook investigates its involvement in immunotherapy treatment that is now being developed as a possible treatment

One of the many theories about the cause of multiple sclerosis (MS) is that a virus is involved, and over the years several viruses have been investigated. Interestingly, the main suspect viruses are different members of the same family of virus – the herpes family.

The particular herpes virus that has attracted most interest is, of course, the Epstein-Barr virus (EBV) and the reason is obvious when you look at the statistics. A recent German study found EBV infection was present in 100 per cent of the 901 MS patients that took part.

Striking statistic

This 100 per cent correlation is a fairly striking fact and it is disappointing that there has until recently been little headway in proving the seemingly obvious theory that EBV is actually one of the causes of MS. All this may be about to change, however, and this is due largely to the work of Michael Pender, a consultant neurologist at the Royal Brisbane and Women’s Hospital and Professor of Medicine at The University of Queensland.

Professor Pender believes that a large body of evidence shows that infection with Epstein-Barr virus (EBV), which causes glandular fever, also known as infectious mononucleosis, has a role to play in the development of MS several years after the original EBV infection. One of the reasons is that after infection the virus lives on in B cells, the white blood cells that make antibodies. Once a person is infected with EBV, they carry the virus in these B cells for the rest of their life.

pic.jpgProfessor Pender believes that in MS, infection with EBV leads to the creation of ‘autoreactive’ B cells, which accumulate in the brain. Once there, these autoreactive cells produce anti-brain antibodies which ultimately lead to the destruction of myelin in the brain and other parts of the central nervous system.

Hidden viruses

By living on after the initial infection, EBV is behaving in a similar way to other members of the herpes family of viruses. This is something you may know from personal experience. After infection with herpes simplex virus (cold sores or Human Herpes Virus 1 (HHV 1)) the herpes virus hides inside nerve cells, hibernating there for life, and periodically waking up from its sleep to reignite infection, causing the cold sores to recur. If you have ever had chickenpox (HHV3) you will also know this can later recur as shingles, the virus also going into dormancy hiding again in nerve cells until returning years later in nerves that lead to the skin.

Professor Pender’s theory about EBV (HHV4) has made several predictions which have subsequently been verified by studies he has conducted, including the presence of EBV-infected B cells in the brain in MS. Perhaps most importantly, over the past few years, working with other researchers, Professor Pender has gone on to use an immunotherapy which involves growing immune cells from the blood of MS patients with fragments of EBV proteins to retrain killer CD8 T-cells (another type of white blood cell) to be potent killers of EBV-infected B cells. The retrained killer CD8 T-cells are then administered to the patient by intravenous infusion. This treatment, known as ‘autologous EBV-specific T-cell therapy’, does not require the use of any drugs.

Hopeful results

A Phase 1 clinical trial tested the safety and tolerability of this therapy in patients with primary and secondary progressive MS. The results of the study were recently published in the journal JCI Insight. Of the 13 recruited participants, 10 received the full course of T-cell therapy. The majority showed improvement, with six experiencing both symptomatic and objective neurological improvement, together with a reduction in fatigue, and improved quality of life. All six patients receiving T-cells with strong EBV reactivity showed clinical improvement, whereas only one of the four patients receiving T-cells with weak EBV reactivity showed improvement. There were no serious side effects associated with the treatment.

Experimental therapy

Most recently, and following on from Professor Pender’s work, a US bio-technology company, Atara Biotherapeutics, has developed an experimental therapy called ATA 188 to treat both progressive and relapsing-remitting MS in this way. ATA188 is an EBV-specific T-cell product derived from healthy people. This therapy is known as allogeneic EBV-specific T-cell therapy and differs from autologous EBV-specific T-cell therapy in that T-cells are derived from healthy subjects (allogenic) rather the MS patients themselves (autologous).

A Phase 1 clinical trial is currently recruiting patients (in the US and Australia) with relapsing-remitting MS and progressive MS to test the safety and tolerability of ATA188 as well as find the best dose for a Phase 2 clinical trial. The trial aims to recruit patients who will receive intravenous infusions of ATA188 at treatment centres in the USA and Australia. The study completion date is 2026.

Five years may seem a long way away for news about a revolutionary new treatment for MS. However, in an illness that was first identified more than 140 years ago, most MSers would agree that nothing happens quickly and sadly we will just have to wait and see. Hopefully, the wait will be worth it.

Meet Jackie, our new Community Fundraiser

Posted on: April 06 2021

Hello, I am Jackie the new community fundraiser for MS-UK! My role is to look after our fundraisers and to be there to help them every step of the way, making sure they enjoy their experience, the challenge and the journey leading up to it! Jackie 1 - Copy.jpg

My background is in customer service and advertising sales, and I love getting to know new people and building relationships with them. I am very excited to have the opportunity to work for MS-UK and I am looking forward to speaking to our amazing fundraisers and getting to know them all.

Out of work I am a huge animal lover and spend a lot of my spare time with dogs. It was a privilege to start here during The Big Purple Dog Walk - I loved seeing the pictures of all the dogs taking part and getting to speak to their owners and find out all about them and what challenges they had set themselves. Dogs really do bring so much joy to our lives!

I am truly grateful to be working for such a great charity and helping people to raise awareness and funds to ensure we continue to be there and make a difference to people’s lives. It makes going to work that much more enjoyable and rewarding! 

Everybody here is incredible and I already feel welcome and part of the team!

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