Another year, another World MS Day. The last Wednesday of May which this year was the 31st , was the day when so many events around Europe (and the world) had multiple sclerosis (MS) as a central theme. Congratulations to everyone for your commitment and initiatives. Words cannot describe how MS united us; it was us, together for MS and stronger than MS!
We are proud of each and every patient, MS society, medical professional, policy decision-maker, researcher and ally for what you did last week. For your continuous efforts to raise awareness about MS and, until a cure is found, to improve the lives of those affected by MS- patients, carers and loved ones.
Life with MS was the theme of this year’s World MS Day. EMSP, as the umbrella organisation of MS societies in Europe, has an ultimate vision of a better life for people with MS (more than 700,000 currently). For this, more research is crucial but we also need the support and active engagement of political leaders at national and European level. And what better location we could find than the European Parliament? Yes, we “camped out ” there from Monday, 29 May until Friday, 2 June.
Our colleagues, Andreea and Yves
Life with MS can be difficult. Each day brings new challenges, which need new solutions.
Our time in the EP was a unique opportunity for members of the EP and visitors to have a fully immersive and virtual experience that highlights the everyday challenges faced by people living with MS. The different rooms of the MS House allow visitors to experience what life feels like for people with MS.
MEP Kateřina Konečná hosted the exhibition and opening reception on 30 May. The MS House is an innovative way to raise awareness on MS and to mobilise policy makers to address the unmet needs that MS patients, their families and carers face every day
“There is currently no cure for MS and the available treatments can only stop the progression of the disease. For many patients, treatment is not available. And that is the reason why we, politicians, are here. This disease should be understood as a complex one. Patients do not need “medication only”, they need specialized neurological, psychological and rehabilitation support. Many of us want to get back to normal life as soon as possible. For this, we need understanding of what we feel and what we go through and this should also be the aim of this exhibition. We must realize that the responsibility is in our hands, in the hands of politicians.”
How was our week at the European Parliament?
During the three days at the EP, we met so many wonderful people, all of them with a real interest in MS and the challenges people affected by it face. From walking difficulties, to performing daily activities like simply holding a coffee mug or cooking dinner when you don’t have MS, these are all normal things we tend not to give too much attention to. But when MS comes to dinner, well… things change. And this is why we were there. To show everyone, from policy decision-makers to the average visitor how and what life with MS is like.
MEP Sirpa Pietikäinen, long time EMSP supporter and ally
From one MEP Adam Kosa, MS champion, to the MS community
MEP Adam Kosa, a deaf person himself and one of EMSP’s champions also stopped by for a short interview:
EMSP: Mr Kósa, first of all, thank you for your commitment and continuous support to our cause. Do you find it useful for policy makers to get a better understanding of the disease, in this case MS, we are asking their support on?
Kosa: Indeed, I find what you are doing here really useful. MS is an autoimmune disorder about which many people, including MEPs, have common misconceptions. Therefore it is really important to raise awareness, explain signs and symptoms and highlight possible solutions because only in this way can we make the life of people who live with this disorder easier.
EMSP: NGOs in the healthcare sector face numerous challenges when addressing the unmet needs of patients at European Parliament or European Commission level. We know you are one of the members who have always stood close to patients, what is your opinion on the awareness-raising campaigns? What could the EP do better support and to strengthen our cause?
Kosa: We need to see clearly that the health-sector is the competence of the Member States. Yet, the European Parliament has a responsibility too, because we can point out what kind of concrete steps should be done by highlight existing good practices.
EMSP: On World MS Day, what is your message to patients with multiple sclerosis around Europe?
Kosa: MS is a huge challenge similar to my everyday challenges as a deaf MEP. We shall reach a society-wide consensus, people with MS shall not be invisible, they need to come out and have their voices heard to show everybody that they are able to live a full life, if we all pay attention to them.
For more photos from the event, please check this link.
For any questions that you might have please contact us. We’re here to support you.
A special thanks goes to Merck for making the exhibition possible.
Until next time,