On the stage of the refectory of Emmaus Abbey, during one evening in November, all those who were not only at the birth of the ReMuS registry, but also its successors, gathered. Musical accompaniment was provided by the singer Katerina Marie Tichá with her band Bandjeez and guests.
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"The registry makes sense; it is a project that fulfils me, we are doing what is good for patients," said Professor Dana Horáková. She makes sure that the data from the ReMuS registry is used correctly, that it is valid, of high quality and that it is not misused. According to her, misusing the data could destroy the entire project. She concluded her speech with a quote from Canadian psychologist Jordan B. Peterson: "Do things in life that are meaningful, not things that are expedient."
Together with her, Professor Eva Kubala Havrdová took the podium twice and confided, among other things, that when she was introduced to the diagnosis of MS, she had the feeling that it was hopeless and nothing could be done. "I started in a time when there were at least twenty people lying in the clinic in Krč who were paralyzed, unable to move or walk, some with severe bedsores, others unable to swallow or even speak. And this was the situation where Professor Jedlička, who was my mentor, was doing something. That fascinated me," She revealed that she had experienced a patient who did not walk and left on her own after a week of treatment. "It was on the level of a miracle," she added, to which moderator Bořek Slezáček humorously remarked that the local monks would be pleased.
And not just locals. Since the existence of the ReMuS registry, more than half of multiple sclerosis patients go to work full-time. "And the biggest advancement is that instead of treating people who are in wheelchairs, we're treating those who are newly diagnosed. That option has only been around since 2005. The shift is huge," said Havrdová."The word 'sclerosis' might sound like an old person forgetting things, but this is a completely different disease," she noted.
"For me, the registry is a huge hope and help. Medicines are getting to us better and at the right time. We will be able to live better right after the diagnosis, we will get the right treatment right away," said Jana Hlaváčová, the current interim director of the European Multiple Sclerosis Platform (EMSP) in Brussels, on behalf of MS patients and the Young Sclerotics organisation. "My life came back to me only when I was put on the treatment I needed and it was effective for me. And I was lucky enough to have all my functions restored after the attacks and there is nothing visible about me," she added with a smile.
Multiple sclerosis is a disease of young people. According to professor Eva Kubala Havrdová, today the awareness is quite good, but it is important to constantly remind everyone. "There would be nothing to look back on if the IMPULS Foundation, which Eva Kubala Havrdová founded 23 years ago, had not been established," said Jiří Drahota, director of the ReMuS registry. "I am glad that so many of you have gathered here. I am also thankful that we could welcome Katya Ticha and the whole Bandjeez and their guests. And we'll definitely see Ingrid Menky again," Drahota concluded the evening by a cake with burning candles.
The Bratislava neurologist Ingrid Menky, who was originally supposed to perform with her band on the occasion of her anniversary, as she did four years ago, unfortunately had her medical obligations interfere with this plan. However, we enjoyed the singer, lyricist and composer Kateřina Marie Tichá to the fullest with the whole band. It was no coincidence that she sang on the occasion of ten years of the ReMuS registry, as she had been working for it herself for more than four years. Only instead of writing annual reports or filling out Excel sheets, she graced the audience at Emauzy with her music to celebrate ten years of the ReMuS Registry.
With her band Bandjeez and guest Michal Mihok (accordion) and Anna Sauce (cello), Kateřina Marie Tichá performed songs from her latest album Sami as well as fresh new songs from her upcoming album Plamen, including a new song "Poprvé" as an encore, and others like "Časy se mění" and "Lampa." Reflecting on her time with ReMuS, she mentioned, " I initially told the former ReMuS director Jana Vojáčková that I'd help for a year or two, but it ended up being four. I'm grateful for those years," she said.
"I'm feeling quite emotional that it's already been ten years. Back then, we didn't really know what we were getting into or the challenges that lay ahead," Dana Horáková concluded the beautiful evening, filled with palpable emotion. We believe that it wasn’t just the emotion that was felt, and we are confident that the registry's data will continue to help many more people live quality lives.
We would like to thank the Benedictine brothers from the Emmaus Monastery, the Clarion Hotel for the refreshments, which included the traditional homemade bread by Kateřina Bémová, chair of the IMPULS Foundation Board, Kateřina Hlisnikovská from the registry for her excellent organization of the evening, the light show by our friends from Kontralicht, and especially the main star of the evening, Kateřina Marie Tichá, along with all the other performing artists.
Photo: Petr Vreštiak
Event update
The life of a doctor is often colourful and brings many unexpected situations from day to day. It was one of them that crossed Ingrid Menka's planned performance in Prague.
However, you won't miss out on a great programme, we are preparing several surprises for the concert of Kateřina Marie Tichá.
We hope you will enjoy your evening with us!
- 25th October 2023
"The ReMuS registry exists and can only exist thanks to the joint work and efforts of many people, starting of course with the patients, colleagues in the MS centres and the team behind the registry. Partners from the treatment field and government institutions also play an indispensable role," says Jiří Drahota, director of the ReMuS registry, adding: "We would like to celebrate the anniversary of the registry together with all of you. The event promises not only an unforgettable acoustic musical experience performed by great singers Kateřina Marie Tichá and Ingrid Menky, but also an opportunity to support the ReMuS registry in furthering multiple sclerosis research. You can also look forward to meeting colleagues from the Registry and the MS Centres or a glass of good wine, and refreshments will be available."
It is not a coincidence that Kateřina Marie Tichá will perform at the concert together with Ingrid Menky. Both singers have been involved in the field of multiple sclerosis for years. Kateřina Marie Tichá, a successful Czech singer-songwriter and last year's winner of the Anděl music award, has worked directly in the ReMuS register for years. Ingrid Menky is a neurologist from Bratislava, thanks to her Slovakia has hosted multiple times our Marathon with multiple sclerosis MaRS and four years ago in October her group Ingrid Menky & Band performed at a Prague benefit concert Scattered connections. "We are extremely pleased that these two ladies, who have done a tremendous amount of work not only for the Czech and Slovak music scene, but also for MS patients, will meet together on stage," says Jiří Drahota.
