What did the European MS Community do during World MS Day 2023?30.05.2023
One month ago the global MS community joined forces on World MS Day (30 May) sharing stories, raising awareness and creating a buzz while campaigning with people affected by Multiple Sclerosis. World MS Day activities took place throughout May and early June accross the globe.
The theme for World MS Day was still ‘connections’. The MS Connections campaign is all about building community connections, self-connection, and connections to quality care.
Our member organisations in Europe prepared several activities to raise awareness of Multiple Sclerosis, to advocate raising the voice of people living with MS in their countries, and to raise funds.
Learn more about what MS Societies in Europe did during the most important day of the year for the global MS community.
Ukraine – Private Roundtable Puts MS to the Fore
On World MS Day day, the global MS community traditionally emphasizes the social responsibility to improve the quality of life of people affected by MS. But the reality of MS patients in Ukraine is the reality of war. Every single day people with MS are exposed to severe stress due to the war and they are constantly at risk of having another relapse.
On May 29, the Ukrainian MS Community (UCMS) held an unusual World MS Day in Ukraine with a private roundtable inviting relevant stakeholders from the MS community in Ukraine. Doctors, patients, as well as representatives of the Verkhovna Rada of Ukraine, the Ministry of Health of Ukraine, and the National Health Service took part in the discussion.
The Head and Deputy head of UCMS also participated in the meeting from abroad. It was a direct dialogue between all parties, including patients, doctors and policy decision-makers.
The most important conclusion was that all participants in the discussion supported joint decision-making and initiating a working group at the Ministry of Health, which will ensure the priority of Multiple Sclerosis for the coming years. Participants agreed that there is an uncontrolled growth in the number of MS patients in Ukraine daily due to severe stress and other wartime circumstances.
The Ukrainian Ministry of Health announced that it plans to create protocols and adapt international standards by the end of summer. In addition, in the autumn, an ongoing HTA procedure will, for the first time, allow Ukrainian patients to receive highly effective drugs through national procurement. Moreover, a potential package of state aid for diagnostics and palliative care was also discussed.
Italy – Launch of the MS and Related Disorders Barometer, the PortrAIts exhibition and more
The National Multiple Sclerosis Awareness Week in Italy has raised awareness about the pathology and shed light on the research and rights of people with MS through several events.
On May 30th, World MS Day, they presented the new Multiple Sclerosis and Related Disorders Barometer to the institutions in Rome. This research provides – am
ong other data – an annual update on the complex epidemiological landscape of MS in Italy, the social costs, insights on access to pharmacological and rehabilitation treatments, and the condition of people with MS at work.
They also celebrated World MS Day at the FISM Annual Scientific Congress, bringing together the most important researchers in MS to highlight the advancements in scientific research towards “our pathways to cures,” as the title of the Congress suggested. Within the Congress Matteo Gastaldi, from IRCCS Fondazione Mondino in Pavia, was awarded with the Rita Levi Montalcini Prize for his studies on autoantibodies responsible for autoimmune diseases of the nervous system.
Hundreds of monuments throughout the country were illuminated in red on World MS Day, a celebration that grows from year to year.
A genuinely innovative communication campaign was also launched on World MS Day. The exhibition PortrAIts succeeded in showing the most subtle symptoms of MS, the invisible ones. The MS Society asked people with MS to describe their invisible symptoms to an Artificial Intellingence tool. Andrea, Cristina, Nevio, Ivan, Eleonora, Rachele, Francesco, Giuseppe, Ileana, and the ambassador of AISM, Antonella Ferrari explained what they meant when they spoke of pain, memory, and numbness in their arms and severe headaches. Based on their stories, the artificial intelligence tool created images which were showcased at an exhibition. The campaign was initially exhibited as a photography exhibition in two major squares in Rome and Milan until June 6th, and continues online on www.portraitsm.it.
Freedom of movement is a crucial right. The inclusive project “An Independent Life Doesn’t Go on Vacation”, promoted by The Italian MS Society with FISH (Italian Federation for Handicap Overcoming) and ENIT (Italian National Tourist Board), offers people with disabilities with a special driving license an inclusive rental service. This project has already received appreciation from the Italian Ministers for Disabilities and Tourism, and represents a milestone in the realization of the Multiple Sclerosis and Related Disorders Agenda 2025 (#1000azionioltrelasm), through which the Italian MS Society actively aim to remove the barriers that limit access to transportation services, accommodation facilities, and cultural heritage.
Estonia – MS Connections, Articles, TV Broadcast and Landmarks Illuminated
This year’s World MS Day in Estonia has primarily been celebrated by raising public awareness of MS diagnosis. Connections being the main topic, the Estonian MS Society also added the fact that MS connects us all even though our lives, as well as symptoms, may very well be entirely different. And for people with MS to find those connections, information on different symptoms should be introduced repeatedly because that is the only way for people to get help quickly in the sense of getting the proper medical treatment. But also get connections with each other and society which in the end leads to more support and less anxiety.
Through two articles where very different stories of people with MS have been introduced, the MS Society also managed to have a short news broadcast on TV on Tuesday, 31 May. There is also a podcast waiting to be recorded, which they would mostly like to aim at newly diagnosed people. Last but not least 3 of their famous landmarks, Skywheel of Tallinn, TV tower and Kaarsild in Tartu were illuminated in orange.
Iceland – Annual Summer Celebration, Mural, and Documentary Screening
The Icelandic MS Society launched an annual summer celebration on 30 May with music, entertainment & refreshments for families.
Additionally, they unveiled a mural and screened the documentary “The Art of Rebellion,” which is the story of artist Lydia Emily and her battle with MS. Lydia. The film’s director also assisted with a Q&A after the screening, and the MS Society also shared stories from 3 young people with MS on their social media channels.
Ireland – MS Ireland to celebrate World MS Day with events throughout Ireland
MS Ireland held events and activities to raise awareness on World MS Day through its great network of local branches and regional offices throughout Ireland, with all details on their dedicated webpage.
MS Ireland held events in Dublin, including a briefing in the Irish parliament, a lecture at Trinity College Dublin, and the annual coffee morning at MS Ireland National Care Centre. Many famous buildings throughout Ireland were lit up in red to raise awareness for MS. Their branches and regional offices held many events, including fundraisers, tea parties, poetry readings, vintage car shows, and information days.
MS Ireland was also commemorating World MS Day with an exhibition of portraits of eight members of the MS community as part of MS Ireland’s schedule of events marking the international awareness day all over Ireland. The theme of the “Faces of MS” exhibition in Dublin, in partnership with Novartis, was to highlight and challenge the perceptions of what people living with MS look like and are capable of. Multiple Sclerosis is different for each person impacted by it. The exhibition aimed to showcase various experiences so people better understand that MS is a very individual condition.
Ava Battles, Chief Executive of MS Ireland, commented: “There is no singular experience of MS; the journey is unique to each individual. Our community has seen huge developments in terms of treatments and therapies over the past three decades, but we still have hurdles to overcome. This World MS Day, we wanted to challenge misconceptions around MS and redefine the “face of MS” in public perception by shining a spotlight on the full and varied lives of those who live with it.”
Czech Republic – Event in Prague and Monument Illuminated
On 21 May, the Czech MS Society has already held an event in Prague, premiering awareness-raising videos about MS and organizing several activities: slaloming on wheelchairs, balancing on a mat, and building blocks with gloves that limit motor skills. People had the opportunity to experience what it’s like to live with MS.
As part of World MS Day on 30 May, the Petřín lookout tower in Prague were lit up in orange. According to estimates, around 23,000 patients live with MS in the Czech Republic, and this illumination took place in their honor.
Slovenia – 50th Anniversary Celebration
This year’s World MS Day was combined with the 50th anniversary of the Slovenian MS society (Združenje multiple skleroze Slovenije). For this purpose, on 27 May, they organized a press conference and an award ceremony for those who have made a significant contribution to the functioning of the Slovenian MS Society or at individual events in recent years through their voluntary work.
The President of the Republic of Slovenia, Nataša Pirc Musar, was the honorary patron of the award ceremony. The MS Society also presented an exhibition of photographs that have been taken over the many years of existence and a few short videos showing how patients cope with life with Multiple Sclerosis in different ways.
Greece – Events organized by the Greek MS Society (GMSS) and the Hellenic Federation of People with MS (HFoPwMS)
On the occasion of World MS Day, the Greek Multiple Sclerosis Society (GMSS) organized g a number of activities and events, having people with MS, their relatives, friends, health professionals and volunteers in mind. On 12 May they organized the opening ceremony of the project #ApoDRASI: Sailing Therapy at the Alimos Summer Cinema.
The Sailing Therapy project, was organized by the Greek Multiple Sclerosis Society (GMSS) in collaboration with the Oceans of Hope Challenge, and it included 2 sailing trips to the Saronic Gulf, from May 6 to 19, for people with Multiple Sclerosis from all over the world. On 24 May the MS Society also held an informative webinar with nationwide coverage, dedicated to the holistic treatment of patients — a discussion among experts in physiotherapy , psychology and neurology, where participants asked questions and queries.
Following this event, on 28 May the Greek MS Society organized a hiking activity – of low difficulty – for patients and caregivers on Mount Olympus, in cooperation with the Hellenic Rescue Team. This synergy aimed at enhancing the beneficial effects of patients’ participation in group activities in nature. Andreas Antonis Markakos, an excellent athlete who has has also climbed the Kilimanjaro, participated in the action as an ambassador for the guidance and mental support of the hikers.
At the same time, the Municipality of Pyli Trikala, on the initiative of the Deputy Mayor of Social Policy, Health & Solidarity Ms. Hara Kaliora, and in cooperation with the Mountaineering Hiking Club of Pyli (O.P.O.P.) and the Cultural Association of Pyli, organized a hike around the Portaikos River.
As every year, on 29 May a celebration a celebration was held in the courtyard of the Attica offices of the MS Society and on 30 May the events culminated with the illumination of town halls, monuments and other iconic sites nationwide in celebration of the World MS Day, with the support of the KEDE.
As for the Hellenic Federation of People Living with MS (HFoPwMS), they co-organized a conference on May 27 2023, in the auditorium of the Aegineition Hospital in Athens. The Conference was organized by the Multiple Sclerosis and Demyelinating Diseases Unit of the 1st University Neurological Clinic of the University of Athens in collaboration with the Hellenic Federation of Persons with MS and the Hellenic Institute of Pediatric, Adolescent and Adult Multiple Sclerosis. Together they celebrated their joint efforts for a holistic approach to MS.
In the context of the MS awareness campaign, “MS Connections” HFoPwMS has issued a leaflet entitled “Answers to the most common questions of persons newly diagnosed with MS.” The questions in the leaflet were answered by renowned healthcare professionals (Neurologists, Psychologists, Physiotherapists, Gynaecologists, Urologists, etc.) from all over Greece and the scientific editing of the texts was undertaken by the Hellenic Academy of Neuroimmunology.
On 30 May, HFoPwMS was uploading on Spotify a series of 10 podcasts where persons with MS and persons from their environment share their stories. HFoPwMS created the podcast entitled “We Connect” within the framework of the Global “MS Connections” Campaign as an activity of an awareness campaign for the persons receiving a diagnosis with Multiple Sclerosis. The podcasts also aimed at establishing communication between the Federation and its member -MS Associations with the newly diagnosed.
Spain – Advocating for Social Changes and Comic on Social Protection Issues Released
On 30 May, the Spanish MS Society (EME) – under the motto “A life in the community” – focused on the need for social changes that allow those affected to live fully in the community.
At the http://diamundialem.org/ website, they created a map collecting the activities held and organized by the member organisations of EME, the links to the awareness materials, and the press release sent to the media. Furthermore, they invited their members to a social participation activity in which EME proposed to send messages related to the central theme of World MS Day.
On World MS Day 2023, Multiple Sclerosis Spain (EME) called the central and regional governments to answer the need for people with this disease to access the social protection measures they need from the moment of diagnosis without having to wait for physical disability to appear.
Among the materials produced for social awareness, the Spanish MS Society highlighted a comic, created with the participation of people with MS and illustrated by Agustina Guerrero, which explains essential issues related to MS, social protection, and the importance of the connection with the community to produce changes that improve the quality of life of people with MS. At last, the Spanish MS Society was also launching an animated video version that collected the most exciting artworks of this comic series.
Portugal – Wildheart Expedition
In April, we introduced the Wildheart Expedition, an MS awareness-raising initiative launched on World MS Day in Portugal. With the support of SPEM (Portuguese Multiple Sclerosis Society), Pedro and Ana Cristina, together with their two 4-legged friends, Cuca and Kyra, set off in search of adventure: discovering remote places in the world, absorbing different peoples and cultures, spreading awareness about MS. On 30 May they embarked on a journey of approximately 150.000km to be completed in 3-5 years, crossing 5 continents and over 60 countries, while living on the road in their Bremach T-Rex expedition truck. Read more here.
Austria – Online lecture, MS Youth Meeting & MuSic Moves Project Launch
The Austrian MS Society celebrated 3 major activities during World MS Day:
- Online lecture on May 30, 2022, 6 p.m. via Zoom at www.weltmstag.at
- Several MS Youth meetings and MS-Movie “Rosy” in the Austrian provinces with participants from Tyrol, Salzburg, Upper Austria, Lower Austria and Vienna https://2023.weltmstag.at/young-ms-treffen/
- Presentation Project MuSic Moves within MS Research Day
The project MuSic Moves was driven by the expressed desire of people with multiple sclerosis for a music-supported exercise program addressing individuals with different levels of disability. The project of the Austrian MS Society aimed to develop music-supported videos for self-training in collaboration with people with MS, MS support groups, and patient representatives, who actively participated as co-researchers.
The project involved a diverse group of 18 co-researchers with MS, 3 caregivers, 49 individuals with MS and 11 researchers, forming advisory, monitoring, steering and research groups. Tasks were transparently assigned, based on individuals’ knowledge and interests while ensuring the inclusion of all participants, leading to the collaborative development and refinement of the exercise program.
Through a joint effort, 148 music-supported videos were created. These exercises were categorized into four types, including
- coordination and balance,
- sensory retraining and fine motor skills and
- stretching, breathing, and relaxation including dance exercises.
Recognizing different levels of physical fitness, the program comprised exercises on three levels of difficulty. The involvement of co-researchers has challenged the traditional views of researchers and inspired the development of innovative ideas by incorporating the needs, preferences and perspectives of people with MS.
On World MS Day, the videos were presented at two events in Absam, Tyrol, and Vienna in cooperation with the Multiple Sclerosis Society Tyrol and the Austrian Multiple Sclerosis Society and Caritas Socialis. These presentations received positive feedback and showed the potential of music-based exercise programs for people affected by MS.
Hungary – Waving for every person with MS in the world
“Not a single symptom should be trivialised!” was the main message of the World MS Day event in Hungary, where a national MS awareness raising event was organised.
“It is not only sudden, severe deterioration that can indicate a worsening of multiple sclerosis, so every new symptom should be reported to the neurologist” said neurologists and MS nurses who gave lectures at the World Multiple Sclerosis Day event in Székesfehérvár, Hungary. The Hungarian MS patient organisation was focusing on the characteristics of MS in 2023, so that patients know when to consult a doctor.
In Hungary, around 10,000 people are living with MS. As in many other parts of the world, the aim of the World MS Day in Hungary was to strengthen the supportive communities of patients and to raise awareness of the disease and the people affected by MS. In Székesfehérvár (the former coronation city of the Hungarian kings), patients and relatives from all over the country waved flags on World MS Day in an awareness-raising action, joining the worldwide movement. “We wave for all the people living with MS, wherever they live in the world,” said Anita Szántai, President of the Hungarian MS Foundation.
Around 170 people with MS and their families took part in the event. The programme included professional presentations by renowned neurologists and rehabilitation specialists. They also presented an essential guide: a book for people with MS and their relatives, with step-by-step instructions on possible care and treatment.
Other Activities in Europe and Around the World
The MS International Federation developed the World MS Day map for this special day. This map allows individuals and organisations to share their initiatives from awareness walks in Botswana to MS exhibitions in Italy. Check all the activities, resources, stories and MS Hearts in the world here: https://worldmsday.org/map/