Social Fund Project in CHARGE syndrome e.V.

The CHARGE syndrome is a rare genetic disorder, about 75 children per year are born in Germany. Among the complex disabilities of these children include a general developmental delay, inter alia, hearing and to Seheinschränkungen deaf, blindness, heart defects, abnormalities of the trachea and esophagus, as well as numerous anomalies, often over the years with many months of hospital stays connected. Despite these limitations, children with CHARGE syndrome remarkably cheerful and ebenstüchtig. Many develop skills with which nobody would have ever expected. These experiences to share, is for parents is crucial. The CHARGE Syndrome Association therefore has the task of parents of affected children in contact with, and an intense exchange. “As a good 3 years before our son was born, we were quite alone. There was no point at which we were able to have contact, no opportunity to work with other parents to talk to. That was our motivation to start a club, “says Claudia Junghans, 1 Chairman of the CHARGE Syndrome Association, the inflow is large. Many parents, both newborn and older CHARGE children, looking for the contact, the Council and find solace and learn from unexpected perspectives for themselves and their child. One of the highlights is the annual Association meeting, to the families for several days to come together and not only of expert talks will benefit, but also from the personal encounter with other stakeholders CHARGE. So far, however, was not all families a club membership and participation in the meeting possible, because some – not least because of the disability of their child – do not have the necessary financial resources. But thanks to the help of Dr. Schmidt & friends, was now a social fund, with the cost for needy families over. “We are very pleased,” says Claudia Junghans, “because we can, for example, single parents, the unemployed and Hartz IV recipients to help them in any serious situation in our community new courage and strength to create.”

Contact: www.charge-syndrom.de