Founding history
Here you can find out how Hoffnungsbaum e.V. was founded in 2002 by affected families.
"Even the longest journey begins with a small step."
(after: Lao Tzu)
When the Klucken family received the diagnosis of "Hallervorden-Spatz syndrome" (now PKAN) for their then 11-year-old son in October 2001, they were not only desperate. She also felt very alone. The doctors had sent her home without any hope of therapies or at least research into this ultra-rare disease.
But then friends of the family found the NBIA Disorders Association (NBIADA, until 2003 HSSA), a self-help group based in the USA. Their website contained a lot of valuable information and testimonials. And the NBIA Disorders Association was already in contact with a doctor at the University of Oregon (OHSU), who had been researching the condition known until 2003 as "Hallervorden-Spatz Syndrome (HSS)" since 1992. Suddenly there was hope again.
After encouraging e-mail contacts with doctors and families in the USA, Angelika Klucken attended the second International Family Conference of the (then) HSSA in Indianapolis, USA, in May 2002. She was deeply moved by the empathy and kindness of the doctors present, especially Dr. Susan Hayflick, as well as the American families affected. However, she was most touched by her encounters with the sick children. No matter how ill they were, they were all so noticeably lovingly cared for by their families - and they radiated so much joy of life!
Angelika Klucken returned home from Indianapolis with a wealth of medical information and groundbreaking research news. There, she and her husband quickly came up with the idea of founding a self-help organization like the one in the USA. The families, but above all the doctors and researchers, urgently needed up-to-date information about this almost unknown disease in Germany. And the research needed money. That was the starting point.
With the help of the Kindernetzwerk e.V., the Klucken family had already made contact with other NBIA families in Germany. They all really enjoyed the personal exchange about their everyday problems caused by their children's illness. No longer alone at last!
On November 24, 2002, the time had come. Together, three affected families and friends and relatives who wanted to support their work founded the association Hoffnungsbaum e.V. - Verein zur Förderung der Erforschung und Behandlung von NBIA (formerly: Hallervorden-Spatz-Syndrom) in Velbert. This was the beginning of a long journey that has not yet come to an end.
"The NBIA Disorders Association has taught us that we really can do something to help our children. If we have hope, our children will have hope. If we are strong, our children will be strong. If we enjoy life, our children will enjoy their lives too. By helping each other, we help ourselves and our children. We are very grateful to the NBIA Disorders Association."
(Angelika Klucken)
