Founding history

Here you can learn how Hoffnungsbaum e.V. was founded in 2002 by affected families.

"Even the longest journey begins with a small step."
(according to: 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 quite perplexed without any hope of therapies or at least research into this ultra-rare disease.

But then friends of the family found on the Internet 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, called "Hallervorden-Spatz Syndrome (HSS)" until 2003, since 1992. Suddenly, hope sprouted 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 physicians present there, especially Dr. Susan Hayflick, as well as the American families involved. However, she was most touched by the encounters with the sick children. No matter how sick they were, they were all so noticeably lovingly cared for by their families - and they radiated so much joy of life!

With a lot of medical information as well as groundbreaking news from research, Angelika Klucken returned home from Indianapolis. There, she and her husband quickly matured 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 in Germany about this almost unknown disease. And the research needed money. That was the starting point.

With the help of Kindernetzwerk e.V., the Klucken family had already connected with other NBIA families in Germany. They all very much enjoyed the personal exchange about their everyday problems caused by their children's illness. 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, founded in Velbert the association Hoffnungsbaum e.V. - Association for the Promotion of Research and Treatment of NBIA (formerly: Hallervorden-Spatz Syndrome). This 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 have hope. If we are strong, our children will be strong. If we enjoy life, our children will enjoy their lives as well. By helping each other, we help ourselves and our children. We are very grateful to the NBIA Disorders Association."
(Angelika Klucken)

Subscribe to our Hoffnungsbaum newsletter!

With our newsletter emails you will receive valuable information about NBIA. If you would like to subscribe to additional info on individual NBIA variants or special info for researchers/clinicians besides the general newsletter, please click here: Subscribe additional info

Privacy policy

You have successfully registered!