There was good news to announce at the 25th birthday of the Christiane Herzog Foundation: there is finally a drug that can effectively help people suffering from cystic fibrosis. Not all patients benefit from it. The lungs are often too severely damaged, especially in older people. But there is every reason for hope.

The anniversary was celebrated as part of a celebratory matinee at Bellevue Palace. First, Elke Büdenbender, the wife of Federal President Frank-Walter Steinmeier, recalled her predecessor in honorary office, “the so-called First Lady”. During the tenure of her husband Roman Herzog, Christiane Herzog had begun to draw attention to the most common hereditary metabolic disease.

“Help with action” was the motto of the energetic woman, whose statement “I’m not the carnation in my husband’s buttonhole” was also quoted that morning.

All those present agreed that their greatest merit was actually making the disease known, from which around 8000 children and young adults are currently suffering. When she began raising funds for the foundation with cooking shows from Bellevue Palace, not even all the doctors knew about this clinical picture.

In a discussion moderated by Jörg Tadeusz, a mother said that even after the relevant test results, the pediatrician did not want to believe that her daughter was seriously ill. And the long-time head of the Christiane Herzog Zentrum Berlin, Doris Staab, remembered how a doctor jovially asked one of her patients before an operation where she had contracted cystic fibrosis.

The new drug even makes it easier for young women to become pregnant, which Sandra Jacobi, chairwoman of the cystic fibrosis association of the Berlin-Brandenburg state association, was particularly happy about. He had repeatedly doubted his vocation as a musician, said the trained drummer Ulrich Hartmann, who also suffers from cystic fibrosis. Until the new drug helped him, so that he can now really do his job.

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He proved that with an impressive performance of the song “Over the Rainbow” with singer Maren Kling. Among others, the former Justice Senator Lore-Maria Peschel-Gutzeit and Eva-Luise Köhler, who has been involved in research into rare diseases since her time as First Lady alongside Horst Köhler, listened attentively.

Without attention, without financial resources, there is no research and therefore no simplification of everyday life and no longer life expectancy. On behalf of the foundation’s board of directors, Anne von Fallois described how Christiane Herzog, who herself died of colon cancer at the age of 63, put herself at the service of those people who “fight every day to find the strength to breathe”.

There are now eight centers and three outpatient clinics that bear her name. But the work is not done yet. Doris Staab, head of the Christiane Herzog Zentrum Berlin for many years, remembered how, as a young doctor, she was supposed to be responsible for sick children and her boss countered the objection that she had no idea about this disease: “You don’t have to, they all die anyway.”

The higher life expectancy thanks to research now means that children can survive their parents, but then end up in old age poverty or loneliness. “New structures have to be created,” she said. “The goal is far from being reached.”