Why is ALS relatively unknown in Germany?

With ten cases per 100,000 inhabitants, ALS is one of the more common conditions within the group of “rare diseases.” Despite its relative prevalence, ALS is relatively unknown in Germany. The low level of awareness surrounding ALS is linked to the specific characteristics of the disease: Due to limitations in mobility and communication, it is particularly challenging for those affected to engage in public advocacy. Family members of those affected are also only able to engage in political advocacy on behalf of ALS to a very limited extent, given the burden of caregiving and psychosocial stress they face.

The number of ALS neurologists in Germany is also very small, so the public outreach efforts of ALS centers are still too limited to attract widespread attention. It wasn’t until 2002 that the disease gained media attention following the diagnoses of artist Jörg Immendorff and Bundesliga soccer player Krysztof Nowak (VfL Wolfsburg). Together with the Charité, Jörg Immendorff sought out the public to raise awareness of ALS through charity events, talk shows, and artistic projects. For example, in 2004, he supported the theater production “Theater ALS Krankheit,” directed by Christoph Schlingensief at Berlin’s Volksbühne, which helped further raise public awareness of ALS. In the years that followed, several television and feature films were produced that focused entirely on ALS: “Sterne leuchten auch am Tag” (2004), “Hin und weg” (2014), and “Herbert” (2016). ALS has also been the subject of several international film productions: “The Theory of Everything” (2014) and “Happiness by My Side” (2014). Thanks to the social engagement of artists, celebrities, and filmmakers, awareness of ALS in Germany has increased significantly.

A major event in the summer of 2014 was the international “Ice Bucket Challenge.” It was the largest fundraising campaign on social media to date, and—thanks to the “viral” nature of the internet—it raised more than 100 million euros in donations worldwide. More than 34,000 donors contributed a total of 1.6 million euros to the ALS outpatient clinic at Charité. In addition to the urgently needed donations, the campaign also generated significant public attention in traditional media (television, print media). As a result, ALS is now one of the best-known rare diseases.

A second attempt at the ALS Ice Bucket Challenge in 2024 failed to replicate the success of 2014, as the element of surprise and the media attention—which had sparked worldwide enthusiasm at the time—could not be recaptured. Nor could the “viral” momentum—which had emerged in 2014 thanks to high-profile supporters (Barack Obama, Bill Gates, Mark Zuckerberg, Leonardo DiCaprio, Oprah Winfrey, Lady Gaga, Taylor Swift, Cristiano Ronaldo, Serena Williams, David Beckham, etc.) and social media in 2014 could not be replicated to the same extent.