19th agosto 2022

Momentos destacados de 2022

2020-2023 MS Connections Eventos destacados del año

2022 was the third year of the MS Connections campaign and the biggest one to date. World MS Day was celebrated in more places than ever before with a total of 119 countries taking part. The global MS movement organised hundreds of activities to raise awareness, connect communities and make change. Together we championed community, self-care and better services for everyone affected by MS. Here are a few highlights from around the world. 

The MS movement used World MS Day to engage global decision makers. There was acknowledgement from Ministries of Health in Barbados, the United Arab Emirates and beyond. City governments showed their support in Brazil, France, the United States and further afield. Here’s a closer look at how MS organisations used its voice for change this World MS Day.

World MS Day at the Purto Rican House of Representatives. Photo by COMSC

Puerto Rico

The Community Organisation of MS and Cancer (COMSC) lobbied every town mayor across Puerto Rico to participate in World MS Day. The initiative was a great success with every Mayor from the 78 municipalities of Puerto Rico taking part. Mayors across the country joined their hands together in the MS Heart, alongside church leaders and grassroots supporters. In the capital, the Puerto Rican House of Representatives commemorated World MS Day together, wearing orange bow ties and facemasks for their third legislative session. 

Spain

Esclerosis Múltiple España (EME) used World MS Day as a platform to champion person-centred care with the slogan ‘people with MS at the centre’. A new committee of 13 people with MS from various backgrounds was created this World MS Day to advise decision makers. The committee has been sharing lived experience with the media, and is serving as an advisory body for EME. It continues to amplify the voices of people with MS, making recommendations to health authorities in the near future.

MPS sign MS rights charter at the Italian Parliament for World MS Day . Image by AISM for this photo

Italy

The Associazione Italiana Sclerosi Multipla (AISM) put MS in the spotlight at the Italian Parliament, meeting with the Chamber of Deputies this World MS Day. AISM presented the ‘Charter of the rights of people with MS and other diseases’, with ten key pillars including health, research and inclusion. The charter was backed by evidence from the MS Barometer, highlighting the current care-gaps for people with MS in Italy. AISM also gave MPs a focus for the future, presenting their new organisational strategy at the sitting. Members of the Italian Parliament pledged their support to the MS Community by signing the charter of rights.

MS Australia

MS Australia put employment and MS in the spotlight this World MS Day, campaigning against workplace stigma and advocating for better support for employees with MS. The findings of its ‘Employment and Workplace Survey’ were released on 30 May, alongside guidance for employers and employees. MS Australia are using this data to raise awareness, and promote practical changes in the workplace for people living with MS

There were community gatherings for MS all across the globe. You showed up, rallied support and had fun in the process!

World MS Day Cycle rally in Kochi India. Image by the Trivandrum Chapter at MSSI

India

Fashion shows, cycle rallies, MS webinars, cinema trips, and so much more. The MS Society of India didn’t hold back this World MS Day with local chapters taking action across the country. A National symposium was also held to shed light on new MS advancements across India.    

Peru

After two years of online meetings, the Asociación Esclerosis Múltiple Perú (ESMUP) were thrilled to reunite in person for World MS Day 2022. Volunteers organised a special party and there was an worked with secondary schools to raise awareness about MS.

Iraq

The Al-Hayat Society organized a big World MS Day gathering for people with MS, family members and health care professionals.  There were talks on the latest advancements in MS research, a special mention to MS nurses alongside some creative performances.

The MS-félag Íslands get together for World MS Day.

Iceland

Golf tournaments, bouncy castles, live-music and more! The MS-félag Íslands organised a day out for all the family  in Iceland.

Egypt

MS Care Egypt took World MS Day to the streets, organising MS and co-morbidity medical screenings in the park. There were comedy performances, Q & A’s with neurologists and a community run along the famous river Nile.  The World MS Day celebrations paid special tribute to MS Care Egypts founder Ahmed Darwish who recently passed away.

The Kuwait MS Society celebrate World MS Day. Image by the Kuwait MS Society.

Kuwait

The Kuwait MS Society used World MS Day as an opportunity to connect in person. A ceremony was held for people with MS, volunteers and state officials. A new collaboration was announced have an MS storyline in a Kuwaiti drama series coming soon.

Costa Rica

The Asociación Costarricense de Esclerosis Múltiple ran educational workshops, raising awareness of MS in schools. The MS organisation also had a big gathering, baking cooking and spending World MS Day as a community.

The MS Community in South Africa running MS workshops. Photo by MSSA

South Africa

The MS Community in South Africa were building MS Connections across the country. MS South Africa organised MS workouts, coffee meets, talks with health care professionals, book readings and a World MS Day picnic.

Greece

The Greek MS Society (GMSS) had a jam-packed month of World MS Day events. The GMSS organised information stands, MS workshops, MS work-outs, art exhibitions and swimming relays. These events raised awareness of MS and deepened the connection between people with MS and society

Waving flags for World MS Day in Budapest. Photo by the Hungarian MS Foundation

Hungary

The Hungarian MS Foundation organized a big gathering in Budapest sharing MS talks and waving flags for World MS Day.  

Algeria

Nourane SEP held an MS Seminar for World MS Day with talks from healthcare professions, stories from people and an interactive Q&A.

As night fell on World MS day, iconic landmarks were illuminated across the globe including Niagara Falls, the Mexican Senate building, and Freedom Square in Cyprus. In Latin America, MS organizations worked together for the fourth year of the «#IluminEMosLatinoamerica» ​​campaign, illuminating skylines orange to symbolise the MS solidarity across borders. What an incredible sight!

The Cyprus MS Association illuminate Freedom Square in Nicosia. Image by Δήμος Λευκωσίας
Niagara Falls glowing orange for World MS Day. Image by Denise Jarosch

The campaign made headlines in Algeria, Iran, France and further afield. Together, the global MS community put MS in the spotlight with 968 items of global press coverage. There were radio features in Botswana and Scotland, podcasts in Latvia and articles in Yemen. World MS Day was marked in Malawi for the first time with a national news piece highlighting the importance better diagnostic tools for MS. The Slovenský zväz sclerosis multiplex ran a press conference in Slovakia’s capital Bratislava to raise awareness and tackle prevalent MS myths. The Cyprus MS Association organised another press conference in Nicosia, that was well attended by government representatives. Meanwhile, the Association Tunisienne des Malades de la Sclérose en Plaques (ATSEP) gave interviews on national TV and radio to raise awareness about MS and promote their World MS Day event.

ATSEP on air to talk about World MS Day Radio. Image by Jeunes Tunisie.
Malawi mark World MS Day for the first time. Screenshot from Nyasa Times article.

The MS Community let their creativity shine this World MS Day.  Supporters took to the stage, painted works of art and got their dancing shoes on for the MS Connections campaign. 

Global

MSIF organised another virtual concert with speakers from MS organisations and the return of the Global MS Choir. There were two fantastic hosts from the MSIF movement this year, Mai Sharawy and Andrea Prato. MS organisations across the world shared videos about their World MS Day plans and the Global MS Choir followed with a beautiful rendition of ‘All You Need is Love’. To celebrate our global diversity, the choir sang the Beatle’s classic in English, Arabic and Spanish.  

The 2022 choir was made up of people affected by MS from over 15 countries.

Hong Kong

The Neuro-muscular Disease Association in Hong Kong organised a charity concert for MS titled ‘You Are not Alone;’ Hong Kong musician and actor Endy Chow 周國賢 performed a special acoustic set and was joined on stage by people with and MS and local neurologists. 

Endy Chow 周國賢 performs. Image by The Neuro-muscular Disease Association

Germany

The Deutsche Multiple Sklerose Gesellschaft Bundesverband marked World MS Day with the cinema premiere of ‘A Big Promise’. Based on a true-story, the new film is about of a married couple navigating the challenges of multiple sclerosis together. The audience had a chance to meet the director, producer and actors with a Q&A at the end of the showing.

Morocco

The Hanasep ran an impressive array of activities at their World MS Day event, including panel talks on treatment, sexuality and MS and creative workshops for dance, painting and beyond.  

Ireland

MS Ireland curated a moving exhibition called ‘The Art of MS Symptoms under the Spotlight’. The exhibition featured 12 inspirational artworks from people living with MS in Ireland. The artists used paint, digital media, and sculpture to share their experience of MS symptoms.

‘The Art of MS Symptoms under the Spotlight’ in Dublin. Image by MS Ireland

Paraguay

The Asociación de Pacientes con Esclerosis Múltiple y Enfermedades Desmielinizantes (APEMED) organised a grand evening of World MS Day entertainment for their ‘Noche Naranja, or orange night. Audience members were invited to laugh and dance the night away with a live comedy performance and DJ set. 

Saudi Arabia

The SAED MS organisation organised a mixed media art exhibition, highlighting the power of art therapy and creativity expression as a means to connect with the wider world. 

Portugal

The Sociedade Portuguesa de Esclerose Múltipla organised an accessible festival in Lisbon for World MS Day. The Solidarity festival was all about inclusion, featuring a vibrant mix of events including live music, dance classes, wheelchair races and more. 

The Solidarity festival  in Lisbon. Image by the Sociedade Portuguesa de Esclerose Múltipla

Global

Hundreds of you made your own campaign art using the MS Connections poster maker. View some of our favourites in the campaign gallery and try making your own.

People everywhere shared their MS Heart for World MS Day 2022. Inspired by a sign language symbol for the word ‘together’, the MS Heart became a symbol of solidarity with everyone affected by MS. Supporters connected their hands or found a friend to create the ‘MS Heart’. MS Hearts were shared from the United States, Honduras, Australia and beyond!

Storytelling is one of the most powerful ways to build connection. Thousands of you shared your MS stories, raising awareness, challenging taboos and inspiring hope. Here are a few incredible storytelling projects across the world.

North Macedonia

The National MS Association of Macedonia (MSMakedonija) ran a powerful storytelling project titled ‘What is the face of MS’. The campaign showed how MS can affect every walk of life. People with MS shared real portraits and stories, expressing every kind of emotion be it sadness, hope or determination.

Here is an extract from Brankica’s story challenging the lack of understanding around MS.

‘I have had MS since 2016. I was blind for almost 8 months, no one knew what was happening to me. Some thought that I used the illness as an excuse for everything, no one understood me that fatigue seems to steal half of my time. There are people who do not believe that I am fighting a serious illness, but here I am, still standing firmly on my feet.’ Brankica

Brankica shares her story in MSMakedonija’s Instagram page

Belgium

The Ligue Nationale Belge de la SEP/ Nationale Belgische Multiple Sclerose Liga shared powerful testimonies from people with MS in a beautiful collection of short films. The video series gives viewers a glimpse into the lives of four people living with MS. It explores different MS from different angles, including family life, accessibility and living with MS as a young person.

Brazil

The Associação Brasileira de Esclerose Múltipla (ABEM) adapted the 2022 poster maker to share stories from their community. ABEM made the poster maker template their own, changing the colours to fit with their organisational brand and adding pictures of people with MS. The images were accompanied by the words of those in the frame talking about everything from diagnosis to life mottos.

Aline Souza shares her story. Image by ABEM

Luxembourg

Multiple sclérose Lëtzebuerg created four short films with people with MS to raise awareness in Luxembourg. The interviews give a glimpse of everyday life with MS, look at the importance of connection and different approaches to symptom management.

Norway

This World MS Day, MS-forbundet i Norge celebrated the donation of two million kroner towards MS research in Norway. A ceremony was held to introduce the five awarded research projects including investigations into EBV, stem cells and biomarkers.

Research awardees. Image by MS-forbundet i Norge.

Indonesia

Multipel Sklerosis Indonesia hosted an online webinar on Ageing and MS and the importance of connections in later life. There was a panel discussion featuring people with MS, healthcare professionals and MS organisation workers. (get a screenshot of this)

Poland

The Polish MS Society produced a series of stress busting videos to equip people affected by MS with practical tools to improve wellbeing. The series is led by a trained psychologist who takes viewers through easy relaxation exercises to try from home. Ukrainian subtitles were added to support Ukrainian refugees with MS in the country. 

Czech Republic

Unie ROSKA organised a two day MS conference the latest on MS research and the health rights of refugees with MS in the Czech Republic. The conference gave information and support to Ukrainian refugees and was attended by government officials from the Czech Republic.

Latin America

The ‘EMpderamiento’ webinar was a cross-border initiative all about empowering people with MS. Leaders from across the MS movement in Latin America and beyond met around World MS Day to discuss key topics from patient rights, to social inclusion and family life. 

Finland

World MS Day celebrations in Finland were all about dreaming big. Neuroliitto ry held a series of workshops on living life to the full with MS, including, nature photography, talks with health care professionals and remote coffee chats.

Japan Yoga

The Japan MS Society organised an online webinar that got viewers thinking whilst they stretched.  Neurologists and doctors discussed the benefits of yoga as a form of MS rehabilitation. The talk was followed by an accessible yoga class for viewers to try from their chairs at home. 

Sweden

Neuroforbundet ran a digital lecture on MS and pregnancy. Neurologist Katharina fink talked listeners through her ongoing research into pregnancy, MS and the impact of Disease-Modifying Therapies.

Argentina

The Asociación de Lucha Contra la Esclerosis Múltiple organised an MS  training day for healthcare professionals in training. The event built connections with key universities, raising awareness of MS amongst future health leaders.

Qatar

A five-day campaign was run over at the Hamad Medical Corporation with the neurology and family education departments. Information booths were set up at Doha Festival City and hospital entrances to educate visitors about MS.

World MS Day information booths in Qatar. Image by Hamad Medical Corporation

Uruguay

Esclerosis Múltiple Uruguay ran a series of workshops focused on self-care and MS management. The workshops focused on mental wellbeing and cognitive rehabilitation.

Romania

The Romanian MS Association held educational workshops on managing MS, rehabilitation and treatment reaching people across the country. 

Colombia

The Asociación para la Lucha contra la EM (ALEM) organised a calendar of MS workshops across the month of May. There were MS seminars on awareness raising, mindfulness, reiki and progressive MS research. 

You crossed the finish line, walked the extra mile and pushed yourselves to the limit for MS. Here are some of this year’s World MS Day challenges.

Global – The May 50K

Time for a victory lap – fundraisers walked, ran and rolled over 500,000 kilometres for The May 50K! The virtual challenge to cover 50 kilometres throughout May raises money for MS research and improving access to treatment. This year, the global movement came together again to deliver the May 50K with MSIF, MS Australia, Esclerosis Múltiple Argentina, MS Society of Canada, MS Ireland, UK MS Society, and Stichting MS Research in the Netherlands. Participants finished on a high on World MS Day with over 13,000 participants raising more than £1,075,000 across 45 countries.

Up and running for The May50K

Central America and the Caribbean

Walking 2300 miles for MS is no easy feat! This was the task that MS Organisations in Central American and the Caribbean set themselves on World MS Day. The Fundación de Centroamérica y Caribe de Esclerosis Múltiple (FUCACEM) and the Foro Centroamericano y del Caribe de Esclerosis Múltiple (FOCEM) organised a virtual race, covering the distance between participating countries. Participants worked together reach their target, raising awareness and funds for MS in the process. Shout out to all the organisations involved! RENACER ASOCOEM, FEMA, ASHOEM, ANPEMUFA, ASOGEM, ANEM, ASENM and EM Cuba.

Slovenia

After two years of COVID-19 restrictions the Walk/Ride for MS was back on the road in Slovenia! 130 people joined the Združenje MS Slovenije on their awareness raising march in Ljubljana, including members of the Slovenian parliament, neurologists and media personalities.

This is just a snapshot of the fantastic events that took place. You can help us capture more highlights by emailing us at [email protected]

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