Art and character
It is quite normal for an artist to create abstract art, to paint using different techniques and to have his own online shop. But this artist is still at school, and he’s almost blind: Art helps Ben to express himself and show how he perceives the world. Ben’s father, Bernd, wants it to achieve much more than that. He established a social startup to draw attention to Alstroem syndrome (ALMS), with which his son was born.
It is estimated that this rare heritable disease affects one in a million people.
- visual impairment up to complete blindness
- cardiac insufficiency
- developmental delay
- short stature
- severe hearing impairment, deafness
Many affected by ALMS die before reaching adulthood. To improve their chances it is important that rare diseases like this are spotted early on. But many wait years for a diagnosis. Bernd Rosenbichler felt this was unacceptable and devoted himself to searching for solutions.
The Alstroem initiative establishes and nourishes networks with a view to improving the situation of people with rare diseases like Alstroem syndrome. There is also a patient organization, Alstroem, in which people with the syndrome and their loved ones can connect with each other. Members are campaigning to promote research into Alstroem syndrome and its symptoms and to create a central contact point for affected people.
Through his art, Ben shows us his view of objects, animals, people and everyday life. This often reveals undiscovered aspects that can be both thought-provoking and inspiring. Ben’s Art empowers other people to question the status quo, arousing their enthusiasm. It calls on them to discover their own talent and explore the world around them, even when the obstacles seem great.
With the aid of Ben’s Art, the Alstroem initiative directs public and political attention toward the disease. It campaigns at European level to establish long-lasting research structures and a patient registry and pushes for better utilization of data and the funding of new methods of diagnosis and treatment. Central research with a global range can lead to earlier diagnosis of rare diseases and this, in turn, can save lives and make them longer.