A Fundraising Gala for a rare disease
Scientific progress is one of the biggest contributors to improvements in human society. Many prominent pioneers show that philanthropy could help fund research, particularly in areas with important benefits for society such as health-related research. At the same time, breakthrough discoveries, cutting-edge methods and novel stem cell technologies in the field of biomedical research now allow the study of a broad spectrum of diseases. To overcome the limiting funding factor for all these new research possibilities, IMBA is actively engaged in private fundraising and research philanthropy. Especially when it comes to the study of rare diseases, like the DBA, research projects require additional private funding.
In 2016, a family with two affected children contacted IMBA, and as a consequence of this initiative, a research project has been launched as a collaboration with the Medical University, Vienna and IMBA, where cutting edge research tools now allow the study of the disease mechanisms underlying DBA. A key question is why individuals carrying certain RPS gene mutations can develop the DBA disease, whereas others with the same mutation may not develop the disorder. It is a research goal to elucidate the genetic cause of DBA and genes which are particularly resistant to the disease. These “resilience genes” may prevent people from falling ill despite their genetic disposition. These mechanisms may not only play a role in DBA, but also in cancer.
Josef Penninger, scientific initiator and founding director of IMBA, said: "Through my training as a physician, I always wanted to do research that will help people in the future. I've already done that on the subject of breast cancer, and now with our team, we're doing everything in our power to study the disease mechanisms underlying DBA". Christoph Klein, Director of the Dr. from Haunerschen Children's Hospital in Munich and founder of the "Care-for-Rare Foundation", emphasized the importance of research on rare diseases for all modern medicine. Jürgen Knoblich, Scientific Director of IMBA, said: "The exciting and important thing about research on rare diseases is that it helps to unravel the fundamental mechanisms of biology and medicine. Many people could benefit from this new knowledge at the end of the day". Knoblich and his team are currently researching a rare disease in the field of epilepsy.
The DBA research project is financed exclusively from private funds. In total, 407.000 Euros have been raised for this research project since the project launch in April 2016.
The flagship event – the fundraising dinner – counted more than 300 prominent guests including political, industrial and economic stakeholders, private philanthropists, media representatives, the scientific community, patient advocacy and support groups, but also the large network of individual supporters for the DBA research project. Prominent supporters included former Viennese mayor Michael Häupl, who is now president of the Vienna Science and Technology Fund, alpine ski-jumping legend Hubert Neuper, Austrian football Star Manuel Ortlechner, top-journalist Rainer Nowak, and many other public opinion leaders, sponsors and donors. The evening was hosted by Austrian actor Harald Krassnitzer, who had a secret wish fulfilled at the end of the evening- for his commitment for the project he was rewarded with Josef Penninger’s cardigan! It was a memorable and emotional event bridging science and society and bringing together people from diverse fields with one common goal: Make research happen!