The focus of the Alliance4Rare segment was one of our most heartfelt projects: research on NEDAMSS, an extremely rare neurological disease. Johnny was diagnosed at just one year old, and the disorder leads to a progressive loss of cognitive and motor abilities. There are only a few known cases worldwide—and so far, no available treatments.
In a conversation with Johannes B. Kerner, Eva Luise Köhler, Johnny’s parents Jens Kiefer and Lina Paulsen, as well as his physician Prof. Dr. Hendrik Rosewich, discussed the disease and the immense need for research on rare diseases. It was a moving moment that made one thing clear: research is the key to health—and urgently needs support. “We want parents to never again hear the words, ‘Unfortunately, there’s nothing we can do for your child’”, said Eva Luise Köhler, capturing the mission of the Alliance4Rare research initiative. Her appeal: “To achieve this, we need your support. Every donation counts!”
Since 2023, Alliance4Rare has funded the largest cross-location research project on NEDAMSS to date, bringing together pediatricians and bioengineers to search for a therapy. “Networking is crucial,” explains Johnny’s father, Jens Kiefer. Only together can we win the race against time.
You can watch the entire gala here (Alliance4Rare from minute 26:00)
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We thank everyone who made this special evening possible and warmly invite you to keep supporting us: Help Alliance4Rare and advance cutting-edge research on rare diseases with your donation. Together, we can bring hope and build a healthier future for children with rare diseases!
