On your marks for World MS Day 2018

World MS Day is only one month away!

World MS

MSIF logo.

World MS Day is almost with us, in fact the countdown has begun to May 30. World MSOrganiser, the MS International Federation (MSIF) says the #bringinguscloser campaign is now in full swing.

In a statement about the day, MSIF said:

Progressive MS Alliance

Over the years, the global MS community has celebrated huge progress in research and treatment for relapsing MS. For progressive MS, however, results have been more limited.

Since 2012, MS organisations around the world have been fighting to change this. How? By joining together to form the first global collaboration on progressive MS: the International Progressive MS Alliance.

Discover more about progressive MS and how the Alliance is bringing us closer to ending it.

Find an event or add your own to the map!

Organisations across the globe are busy preparing for World MS Day.

On the map, you’ll find some new exciting additions: MS Ireland is holding a networking event for researchers. In Uruguay, a stand-up comedy show will bring together people affected by MS and doctors, nurses, psychologists, scientists and many more.

There’s still time to organise your own event! Search the map for events taking place near you and get inspired.

Celebrating progress in MS research

MS research is bringing us closer to ending MS. In order to maintain this momentum, it’s crucial to promote and reward innovation and achievement in MS research.

Discover how organisations across the global MS movement are supporting and rewarding people who are dedicated to advancing MS research, including ambitious students and young researchers.

Frances Evans, UK

World MS.

Frances Evans.

‘MS is different for everyone. I know I won’t experience all of the symptoms in my lifetime, but I do know what it’s like to live with some of the life-changing challenges that come with it.’

As a teenager, Frances had already chosen to become a research scientist. Then, at 19, she was diagnosed with MS. Despite feeling scared, Frances used her experience as motivation to focus her career on MS research.

Discover more about Frances’s journey.

Yaou Liu, China

World MS.

Yaou Liu.

As a medical student, Yaou felt inspired after meeting young people living with MS. ‘We were peers, brilliant with beautiful dreams’, he remembers. ‘Yet they lived with MS, which set huge barriers for them.’

‘This inspired me to get involved in MS research.’

With support from MSIF’s Du Pre grant and McDonald Fellowship, Yaou has forged a successful career in MS research and is bringing us closer to ending MS.

Milestones in MS research

Over the past 150 years, so much has changed in MS research.

Yet, MS researchers today still use the definition of MS that was first introduced by French neurologist Jean-Martin Charcot in 1868.

This is just one of many milestones in MS research – visit the World MS Day website to discover more!

#bringinguscloser

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Raising public awareness is our job too – it’s not just down to others

Increasing public awareness of multiple sclerosis is something that everyone with the disease does all the time. It may not always be planned but, think about it, you do it whenever you answer someone’s question.

This month, however, it gets even bigger. After all, March is MS Awareness Month in the US, while the 30th is World MS Day.

Multiple Sclerosis Awareness Month

awarenessThe Multiple Sclerosis Association of America (MSAA) is focusing its 2018’s awareness campaign on Understanding MS Progression.

This includes three specific topics. These are MS relapse management, brain preservation and cognition in MS, and healthy living with primary-progressive MS (PPMS).

You are invited to join in the following MS Awareness activities scheduled during March:

  • A live “Ask Me Anything” event with a special focus on MS relapses on Monday, March 12, from 6:00 – 7:00 pm Eastern. This online event will be hosted on My MSAA Community, MSAA’s peer-to-peer forum. Please visit My MSAA Community for more information and to join.
  • MSAA’s free Live Webinar, “Helpful Tools for MS Relapse Management” on Tuesday, March 13, from 8:00 – 9:00 pm Eastern featuring Elizabeth Crabtree-Hartman, MD.
  • A free in-person educational program to learn more about The Importance of Brain Preservation and Cognition in MS. Please see MSAA’s Calendar of Events page for more details.
  • Take MSAA ‘s MS and the Brain Survey, and look out for the results which will be presented the week of March 19.
  • A live “Ask Me Anything” event dedicated to the Importance of Brain Preservation and Cognition in MS on Monday, March 19, from 6 – 7pm Eastern. This online event will be hosted on MSAA’s Facebook page so please follow @MSassociation on Facebook and tune in for the AMA on March 19, at 6pm Eastern.
  • Attend a free in-person educational program to learn more about primary-progressive MS. Please see our Calendar of Events page for more details.
  • Join MSAA and Steven Bromley, MD for a live “Ask Me Anything” event exploring primary-progressive MS on Thursday, March 29, 2018 from 6 – 7pm Eastern. This online event will be hosted on MSAA’s Face book page so please follow @MSassociation on Facebook and tune in for the AMA on March 29, 2018 at 6pm Eastern.

https://mymsaa.org/about-msaa/ms-awareness-month-2018

MS Awareness Week

This important week, March 11 – 17, is organized by the USA’s National MS Society, which is challenging all of us who have this disease to do our bit. It says: “

By sharing their stories, we help people better understand life with MS and become inspired to do whatever it takes to change the world for people living with MS. 

You can help ensure that more people understand what life with MS can be like and engage more people to do something about it, by following our media channels and sharing the stories of those living with MS, who move life forward every day and don’t let MS define them.

Together, we will do whatever it takes to change the world for people with MS.

https://www.nationalmssociety.org/Get-Involved/Raise-Awareness

World MS Day

awarenessAs always, World MS Day is marked on May 30. It brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by multiple sclerosis.

The 2018 campaign will be called #bringinguscloser and the awarenesstheme is research.

In 2009, the MS International Federation (MSIF) and its members initiated the first World MS Day. It has reached hundreds of thousands of people around the world, with a campaign focusing on a different theme each year.

The MSIF provides a toolkit of free resources to help everyone to take part in World MS Day. Anyone can use these tools, or make their own, to create positive change in the lives of more than 2.3 million people around the world.

https://worldmsday.org/about/

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

* * * * *

50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

* * * * *

Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

It’s World MS Day, does it really matter?

Today is World MS Day. And this should be an important day for raising awareness of multiple sclerosis in countries around the globe. But that is not what is happening.

world ms dayEven though the supposedly special day is coordinated by the MS International Federation (MSIF) and has its own website, the national charities prefer to concentrate on their own activities.

Just look at the World MS Day website list of these activities:

MS Carnation Campaign, Canada

From 11-13 May, the MS Society of Canada mobilised people across the nation to support the MS Carnation Campaign for Mother’s Day.

Theatre for MS, Egypt

Throughout April, the MS Care Society Egypt raised awareness of the stigma surrounding MS and other conditions by organising theatrical performances featuring people with MS.

Book Launch: “Endless story of MS”, Slovakia

From 11-12 May, the MS Society of Slovakia marked the launch of “Endless story with MS”. It is a book full of personal stories of people with MS.

Wellness Seminar, India

On 14 May, the Mumbai Chapter of the MS Society of India (MSSI) organised an educational seminar on methods for managing MS, led by renowned medical & health practitioners in Mumbai.

Solidarity Fundraising Walk, Portugal

On 30 April, people took to the streets of Peso da Régua, Portugal, for a solidarity fundraising walk in honour of World MS Day.

As strange as it may seem, the fact is that not one of those activities is being held on World MS Day itself. The website does not list any event being held today.

Additionally, major national organizations are embracing their own awareness events.

Just take a look at these examples:

  • USA – National MS Awareness Month held in March.
  • Canada -National MS Month held in May.
  • UK – MS Awareness Week held in March.
  • New Zealand – Awareness Week held in August.

With support of that magnitude, or lack of it, I really think the MSIF should drop the idea of World MS Day. Clearly, it does not have necessary international support.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

* * * * *

50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

World MS Day: ‘MS doesn’t stop me’

world-ms-day-logo

People with MS were challenged yesterday, as part of World MS Day 2016, to celebrate all the ways that they maintain their independence and get on with their lives.

By sharing examples of independence from lots of different countries, the Multiple Sclerosis International Federation set out to inspire people to challenge perceptions of what people with MS can and cannot do.

Here’s just a few examples received from around the world:

MS doesn’t stop me …

… applying my skills

I work part-time at a computer centre. I can choose the hours I work and manage efficiently with limited energy. Being able to continue working makes me feel independent.

… staying active

Kayaking has been massively important to me. It has not only helped my physical rehabilitation; it has aided my mental wellbeing. Without kayaking, I am not sure my body would be as strong as it is now.

… running my business

Everyone at my workplace knows that I have MS, including my clients. I’ve had to become a role model in my community because there has been no one else for me to imitate.

… having the determination to succeed

It’s important to have dreams. I’m in my last year of high school and I imagine myself becoming a successful interior designer. When I think of something I want to do, I stay focused and determined until I succeed.

being part of the family

I live in a centre which provides care for people with progressive MS. Since moving here, I am so much more independent. Now that my husband is no longer responsible for my care, I’m just part of the family and we can do nice things together.

… me empowering other people

I’ve always loved sport. Before being diagnosed with MS I was a keen footballer. I now coach a wheelchair basketball team. The most fulfilling part of it is helping other people build their confidence and find a sense of achievement.

… learning new things

I used to be a bank manager, but now I use my time to study new topics like history, astrology and painting. MS has given me the chance to do more for myself, gain knowledge and become a better person.

spending time with my daughters

Nine years ago I was diagnosed with primary progressive MS. While my wife is at work, I take care of the household duties and look after our daughters when they finish school. Continuing to feel useful is very important.

… having inner strength

I was diagnosed with MS when my children were very young, which was really hard, but I didn’t let it drag me down. MS has shown me how strong I can be.

… living my life the way I want to

Catheters have made a big difference to my independence. I can relax about doing things like going out to meet friends… It’s also a bit of a party trick. I pull it out of my handbag and get people to guess what it is!

seeing the beauty in life

We are examples of how people are living with MS. We are people on crutches, people in wheelchairs and we’re all living and working. The world doesn’t end because we have MS. We show people how they can continue to live with MS.

… getting out and about

My wheelchair is my constant companion and my assistant, helping me get from A to B. I rely on it to get me around, but I have never seen it as an embarrassment or a sign that says: “now I am disabled”.

… taking pride in my home

The little things I can do at home make me happy. I sweep the floor, dust the furniture and wash the dishes. It’s funny because I’d never done any housework before, but now I really enjoy it! I’ve learnt a lot from my MS.