Written by Prof. Dr. Oliver Semler

The University hospital in Cologne has received a charity award for OI Research from the German charity foundation “Ein Herz für Kinder” (a heart for children). This charity foundation supports a lot of social projects helping children. Every year at the beginning of December, the big “A Heart for Children” fundraising gala is broadcasted on German television. It is one of the most successful galas in Germany.

TV-show with entertainment and famous guests

OI was one of the topics selected for the charity TV-Gala “Ein Herz für Kinder” in the 2023 Christmas season in Germany. “Ein Herz für Kinder” is a charity foundation supporting a lot of social projects around the year. During the TV event, there will be calls for donations aimed at both private individuals and companies. With this money, all projects throughout the year are financed. In the show they present some of these projects. It is a well-recognized TV show in Germany with a lot of entertainment, stars, celebrities and politicians like the chancellor of Germany, underlining the impact of the yearly event.

Videoclip about what OI means in daily life

In a short videoclip Oliver Semler from the children´s hospital at the university Cologne and one of his young patients (Klara) described OI and what this means in daily life and which treatments are currently available. Scenes in the hospital and at the home of the family were combined to give a broad impression about “living with OI” (as broad and realistic it can be in a video of 3 minutes).

After this prerecorded video (in German language), Klara, her twin sister, the parents and Oliver Semler entered the stage for a short interview with the moderator of the show Johannes B. Kerner.

Donation for research of new drug in a rare type of OI

The project presented is a research project to investigate the effect of a new drug (antisclerostin) in a rare type of OI and early onset osteoporosis caused by mutations in the gene “WNT”. Antisclerostin is currently investigated in two clinical trials in individuals’ people with classical OI caused by mutations in COL1A1/2.

From the pathophysiology, antisclerostin should have a good effect in patients with WNT-mutations. But due to the rarity of this type it is not of interest for pharmaceutical companies. Therefore, Oliver Semler and his team want to run a small pilot trial to assess the efficacy of the drug in this special group of people with OI.

Charity event raised more than 21 million Euros

Altogether it was a big event and a great possibility to increase awareness of OI and the different severities of the disease. More than 2.5 million people were watching this live show at a Saturday evening two weeks before Christmas 2023. For all projects which are supported by “Ein Herz für Kinder” (not only those presented in the show) this charity event raised the enormous amount of more than 21 million euros. A small amount of this is now assigned for research to improve medical treatments in children and adolescents with “atypical” OI.

This article has first been published in OIFE Magazine 2-2024.