Here's how Hoffnungsbaum e.V. was founded in 2002 by affected families.
"Even the longest journey begins with a small step."
(from: Lao Tzu)
When the Klucken family was diagnosed with "Hallervorden-Spatz Syndrome" (now PKAN) for their then 11-year-old son in October 2001, they were not only desperate. She also felt very abandoned. The doctors had sent her home with no hope of therapies or at least research into this ultra-rare disease, rather perplexed.
But then friends of the family found the NBIA Disorders Association (NBIADA, until 2003 HSSA), a support group based in the United States. 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, which was called "Hallervorden-Spatz syndrome (HSS)" until 2003, since 1992. Suddenly, hope sprouted again.
After encouraging e-mail contacts with doctors and families in the U.S., Angelika Klucken In May 2002, he attended the second International Family Conference of the (then) HSSA in Indianapolis, USA. She was deeply moved by the empathy and kindness of the doctors present there, especially Dr. Susan Hayflick, as well as the affected American families. However, she was most touched by the encounters with the sick children. No matter how sick they might be, they were all so palpably lovingly cared for by their families – and they radiated so much joie de vivre!
With a lot of medical information as well as groundbreaking news from research, Angelika Klucken back home from Indianapolis. There, she and her husband quickly came up with the idea of founding a self-help organization like 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 research needed money. That was the starting point.
With the help of the Children's Network e.V., the Klucken family had already made contact with other NBIA families in Germany. Everyone very much enjoyed the personal exchange about their everyday problems that their children's illness brought with it. Finally no longer alone!
On November 24, 2002, the time had come. Together, three affected families as well as friends and relatives who wanted to support their work have the association in Velbert Hoffnungsbaum e.V. – Association for the Promotion of Research and Treatment of NBIA (formerly: Hallervorden-Spatz Syndrome). That was the beginning of a long road that is not yet over.
"The NBIA Disorders Association has taught us that we can really do something to help our children. If we have hope, our children will hope too. If we are strong, our children will be strong too. If we enjoy life, our children will enjoy theirs as well. By helping each other, we help ourselves and our children. We are very grateful to the NBIA Disorders Association."