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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's a project that fulfills me because we are doing what benefits the patients," said Professor Dana Horáková. She ensures that the data from the ReMuS registry is used correctly, remains valid and of high quality, and 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."Professor Eva Kubala Havrdová also took the stage twice, sharing her experience when first encountering the diagnosis of MS, 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 once treated a patient who couldn't walk, but after a week of treatment, the patient was able to leave on her own. "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 the locals. Since the ReMuS registry has existed, more than half of people with multiple sclerosis work full-time. "The biggest progress is that instead of treating people who are in wheelchairs, we are now treating those who have been newly diagnosed. This has only been possible since 2005. The shift is significant," said Havrdová. "The word 'sclerosis' might sound like an old person forgetting things, but this is a completely different disease," she noted.
"The registry is a huge source of hope and help for me. Medications reach us better and at the right time. We can live better lives immediately after diagnosis, receiving the correct treatment right away," shared Jana Hlaváčová, representing MS patients and the organization "Mladí sklerotici," and currently the interim director of the European Multiple Sclerosis Platform (EMSP) in Brussels. "My life returned to normal only when I received the treatment I needed and that was effective for me," she added with a smile.
Multiple sclerosis is a disease that affects young people. According to Professor Eva Kubala Havrdová, awareness has improved, but it's essential to keep reminding the public. "We wouldn't have come this far without the establishment of the IMPULS Foundation 23 years ago," said ReMuS registry director Jiří Drahota. He expressed his gratitude to everyone for attending the event, which featured a performance by Kateřina Marie Tichá and the Bandjeez, and concluded the evening with a cake and candles.
Bratislava neurologist Ingrid Menky, who was originally scheduled to perform with her band at the ReMuS anniversary event, had to cancel due to medical obligations. However, singer-songwriter Kateřina Marie Tichá, who worked for the ReMuS registry for over four years, performed a beautiful acoustic set of her own and cover songs with her band. 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 musicians Michal Mihok (accordion) and Anna Sauce (cello), Kateřina Marie Tichá performed songs from her latest album Sami and fresh tracks 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 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
A doctor's life is often colourful and brings many unexpected situations from day to day. It was one of them that crossed Ingrid Menky's planned performance in Prague.
However, you will not 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 sites 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 team and the MS centres aver a glass of good wine."
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 Registry for years. Ingrid Menky is a neurologist from Bratislava, thanks to her Slovakia has multiple times hosted our Marathon with multiple sclerosis MaRS (MaMS) and four years ago in October her group Ingrid Menky & Band performed at a Prague benefit concert Multiple Together. That event has also supported ReMuS Ragistry activities. "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.
