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MS AWARENESS WEEK 18th- 24th APRIL…

MS AWARENESS WEEK – 18TH – 24TH April – MS can be tough, and for many people talking about it can be challenging. Whether you’re opening up to a friend after being newly diagnosed, or finding the right words to describe symptoms to an employer. Sometimes it feels easier not to say anything at all.

#LetsTalkMS

That’s why for MS Awareness Week 2021 they spoke up using #LetsTalkMS. Scroll down to find resources to help you to feel confident about speaking up. And read stories of how others found their voice. Help Break the silence around MS.

The MS Society teamed up with Robin (who has MS) from the comedy group Noise Next Door. With your help, they wrote a song about life with MS. They are always happy to share MS stories on their social channels and blog.

Any help in any way could help towards stopping MS.

Take action and change lives.

Too many people affected by MS in the UK have to fight for the treatments, services, care and support they need.

Together we can change that.

Do you have a question about MS campaigns? Get in touch at campaigns@mssociety.org.uk

Multiple sclerosis (MS) is a condition that affects your brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged. This causes a range of symptoms like blurred vision and problems with how we move think and feel.

Once diagnosed, MS stays with you for life, but treatments and specialists can help you to manage the condition and its symptoms.

More than 130,000 people in the UK have MS. In the UK people are most likely to find out they have MS in their thirties, forties and fifties. But the first signs of MS often start years earlier. Many people notice their first symptoms years before they get their diagnosis.

MS affects almost three times as many women as men. People from many different ethnic backgrounds can get MS. Read the latest statistics on MS in the UK.

The Amazing History of the MS Society

In 1953, our founders Richard and Mary Cave were frustrated at the lack of treatments and support available for Mary’s MS. So they decided to do something about it.

They set up their first meeting in West London, a small number of people came and the MS Society was born.

Today, we have around 30,000 members and groups in every part of the UK. Richard and Mary’s work has inspired thousands of volunteers, supporters and staff members to make a difference to the lives people affected by MS.

Find out about some of our highlights from the last 60 years.

1950s – The MS Society is born

1953 – Richard Cave hosts first ever meeting in Chelsea Town Hall, London.

1954 – Association of Scottish Branches (now local groups) formed. 

1956 – First branches (now local groups) formed in Wales and Northern Ireland. 

1958 – We establish Research Fellowship Scheme and commit £18,363 to MS Research. 

1960s – Our first MS research appeal on the BBC

1960 – BBC hosts our first TV appeal.

1962 – Our ‘Welfare Services Spending’ reaches £63,000 to help support and care for people affected by MS. 

1967 – Our membership tops 18,000 people.

1964 – The 100th MS Society branch is established.

1970s – 241 local groups support people with MS

1973 – Our research spending reaches £1,000,000. 

1975 – By the mid 70s, we have 241 branches (now local groups) and over 30,000 members

1980s – We invest in the first MRI scanner for MS

1983 – We give £1 million research grant for the purchase of the first magnetic resonance imaging (MRI) scanner in the world to be solely dedicated to MS research. The scanner changed the way MS was diagnosed.

1988 – The European MS Platform is launched, to lobby, raise awareness, and provide information. 

1990s – We launch the MS Helpline

1991 – We launched the MS Helpline, offering support and information to anyone affected by MS. We now deal with 13,000 enquiries a year by phone and email.

1998 – Northern Ireland MS Society starts to build a new Resource Centre.

1998 – We fund the MS Tissue Bank, the largest distributor of MS brain and spinal cord tissue to MS research in Europe. 

1999 – We launched the MS Nurses Programme to fund and develop much-needed MS nurse posts around the UK. 

2000s: £7 million investment in MS research

2000 – We host the largest MS lobby in the UK Parliament, ‘Ending the Lottery of Care’.

2002 – MS Society Essentials series is launched, responding to topics people with MS wanted information about. We now have a range of information resources.

2003 – We set up the Research Network to ensure people affected by MS shape the MS Society’s research programme. 

2005 –  We award £1,428,674 to set up the Cambridge Centre for Myelin Repair.

2007 – Launch of the Symptom Relief Research Initiative to raise awareness and fund research into symptom management for people with MS. 

2008 – We invest over £7 million into new MS research – the largest investment to date. 

2008 – Research investment includes over £2.5m in a state-of-the-art 3-Tesla MRI scanner at the National Hospital for Neurology and Neurosurgery in London. The scanner is dedicated solely to MS research. 

2009 – We launch the first project into childhood MS in the UK in partnership with the children’s charity Action Medical Research. 

2010s – Incredible research breakthroughs

2010 – We partner with UK Stem Cell Foundation to fund up to £1 million worth of stem cell research.

2010 – Research we funded leads to breakthrough showing that damage to myelin can be reversed using stem cells.

2011 – Research we funded into vitamin D shows a direct link between vitamin D and a gene linked with MS. 

2011 – Launch of the first ever MS Register to measure the impact of MS. 

2012 – Botox is licensed for the treatment of overactive bladder in MS. We funded early clinical trials of this symptom management treatment.

2013 – In partnership with the James Lind Alliance, we identify the top ten research priorities that matter most to people with MS.

2014 – Researchers we’ve funded announce finding that exercise can help beat MS fatigue.

2014 – Through the Progressive MS Alliance we help fund 22 research projects aimed at developing successful treatments for people with progressive MS.

2015 – We publish a new consensus on the importance of early treatment for relapsing forms of MS, which could transform life for thousands of people.

2015 – We launch MS SMART, a groundbreaking clinical trial to find treatments for secondary progressive MS.

2016 – We invest £5.7million in research, with £2.5 million going to projects looking for new effective treatments for MS.

2017 – We co-fund MS-Stat2, a study to confirm if simvastatin can slow or stop disability progression for people with secondary progressive MS. It’s the UK’s largest ever trial for secondary progressive MS and will run until 2023.

2018 – With the MS community, we boldly call for medicinal cannabis to be available for people with MS who could benefit.

2018 – MS-SMART results are announced. They tell us a lot about the biological pathways in progressive MS, helping researchers rule out and prioritise other drugs for future trials.

2019 – We launch our ambitious Stop MS Appeal. Stop MS aims to raise £100 million to transform what it means to live with MS, for everyone with the condition.

2020s – Speeding up the development of treatments

2020 – We launch our new five-year strategy, Every MS Story. At its core are the MS stories of the 130,000 people living with MS in the UK, and their carers, family and friends.      

2020 – In partnership with Bournemouth University, we launch our free online fatigue management course for people with MS.

2021 – We introduce Octopus, our revolutionary, multi-arm, multi-stage trial that will transform the way we test treatments for progressive MS.

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WORLD MS DAY MAY 30th, 2021…

World MS Day May 30th, The 2020-2022 World MS Day theme is ‘connections’. MS Connections is all about building community connection, self-connection and connections to quality care. 

World MS Day is officially marked on 30 May. It brings the global MS community together to share stories, raise awareness and campaign with everyone affected by multiple sclerosis (MS). World MS Day activities take place throughout the month of May and in early June. The campaign offers flexibility for individuals and organisations to achieve a variety of goals.

The campaign tagline is ‘I Connect, We Connect’ and the campaign hashtag is #MSConnections.MS Connections challenges social barriers that leave people affected by MS feeling lonely and socially isolated. It is an opportunity to advocate for better services, celebrate support networks and champion self-care.

I Connect, We Connect

MS Connections is a flexible, wide-ranging theme. Whether you’re individual or an organisation, you can choose to focus on a variety of angles when celebrating World MS Day, including:

  • Challenging social barriers and stigma that can leave people affected by MS feeling lonely and isolated
  • Building communities that support and nurture people affected by MS
  • Promoting self-care and healthy living with MS
  • Lobbying decision makers for better services and effective treatment for people with MS
  • Connecting people affected by MS to MS research.

Multiple sclerosis (MS) is one of the most common diseases of the central nervous system (brain and spinal cord). Today, 2.8 million people around the world have MS.

MS is an inflammatory demyelinating condition. It is caused by damage to myelin – a fatty material that insulates nerves. In MS, the loss of myelin affects the way nerves conduct electrical impulses to and from the brain. Symptoms can include blurred vision, weak limbs, tingling sensations, unsteadiness, memory problems, and fatigue.

Most people with MS are diagnosed between the ages of 20 and 40. MS is two to three times more common in women than in men. There is no drug that can cure MS, but treatments are available which can modify the course of the disease.

To find out more about MS, get in touch with an MS

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MS AWARENESS WEEK April 19th-25th, 2021 – #LetsTalkMS…

MS Awareness week will run from 19th-25th April, 2021. The focus of the MS Societies Awareness Week is a chance to raise awareness of multiple sclerosis, and spread the word. #LetsTalkMS.

MS Awareness Week are saying #LetsTalkMS.

The MS Society will give you the tools to feel confident about speaking up. And share stories of how others found their voice. With your help, you can create lots of buzz on social media and in the press. #LetsTalkMS.

This year MS Awareness Week wants you to speak up about MS and the work of the MS Trust. Multiple sclerosis is a complex condition which is often misunderstood. By raising awareness of MS, and the MS Trust work supporting people living with the condition, you’ll help ensure everyone with MS gets the support and information they need.

People with M.E. disappear from society and can easily be forgotten and overlooked. The MS Trust say do it your way. Whether you are holding a bake sale or planning a party, fundraise YOUR way for people with MS. They will be there to help every step of the way.

Please share REAL stories and images far and wide between 19th-25th April.

MS in nearly three times more common in woman than men. It is also more common in countries further north or south from the equator.

Facts about MS

  • MS is a disease affecting the central nervous system (the brain and spinal cord).
  • It’s estimated that 130,000 people in the UK have MS.
  • Every week around 100 more people are diagnosed.
  • It’s nearly three times more common in women than in men.
  • Most people are diagnosed in their 20s and 30s but it can be diagnosed in younger and older people.
  • MS isn’t infectious or contagious so you can’t catch it or pass it on to other people.
  • MS is the most common condition of the central nervous system affecting young adults.
  • MS is a life long condition but it is not a terminal illness.
  • Everyone’s MS is different so no two people will have the same range and severity of symptoms, even if they are closely related.
  • MS is more common in countries further north or south from the equator.
  • MS is not inherited, but family members do have a slightly higher risk of developing MS.

What happens in MS?

Your immune system is your body’s natural defence system which helps your body fight against infections.

Your central nervous system contains nerve cells which process information and communicate messages to and from different areas of your body triggering a response, such as lifting your foot when walking or contracting the muscles in the bladder wall so you can empty your bladder.

In MS your immune system mistakenly attacks your central nervous system. When the attack happens, the immune system targets the protective covering around your nerves (called myelin). This covering is there to protect your nerves and help messages travel along them smoothly.

When myelin is damaged (called demyelination) messages don’t pass along your nerves as efficiently as they used to so messages can be delayed or sometimes may not get through at all. These areas of damage are called lesions and they cause the symptoms you experience.

After an attack your body is able to repair itself to some extent. In the earlier stages of MS, your body has the ability to replace the damaged myelin (called remyelination), although it tends to be thinner than unaffected myelin so the messages may not travel as fast as they did before. Your brain also has the ability to reroute messages to avoid an area of damage so that messages can still get through – this is known as plasticity.

MS is thought to be an autoimmune and neurodegenerative condition. Autoimmune because your body is attacking healthy cells and neurodegenerative because the loss of myelin can leave nerves exposed and more vulnerable to long-lasting damage.

Symptoms vary from person to person and from day to day. This can make your MS rather unpredictable. It’s completely normal for it to take some time to adjust and adapt to this unpredictability going forward in your life.

Some of the most common symptoms around the time of diagnosis are fatigue (a kind of exhaustion which is out of all proportion to the task undertaken), unusual feelings in your skin (such as pins and needles, numbness or burning), problems with eyesightmemory and thinking problems, and walking difficulties (such as tripping, stumbling, weakness or a heavy feeling in your legs).