About the Parents Organization
Takenokonokai is made up of parents who have children diagnosed with Prader-Willi Syndrome (PWS): a disorder resulting from abnormality on the 15th chromosome. The organization was founded in August of 1991 by 13 mothers who had PWS diagnosed children receiving treatment at the National Center for Child Health and Development.
Takenokonokai wishes for the healthy development of PWS children. It aims for the exchange of information for parents and access to medical, educational, welfare and social environments by means of the following activities.
Details of Activities
Currently, (as of July 2008) we have members from over 530 households, 15 branch offices nation wide, and 35 prefectural group organizations. Our activities include educational meetings, exchange amongst members, and publication of our branch office newsletters.
Furthermore, we support the progress in the fields of genetics and neurology so that many diseases including PWS will become more treatable.
Shizuoka （Chairperson house）
■ Branch Offices
Working with Takenkonokai
Former Professor of Dokkyo Medical University Koshigaya Hospital Toshiro Nagai M.D., Ph.D.
The year of 1991 was a memorial year for both patient support group in Japan (Takenokonokai) and me. In 1991 I had an opportunity to see 2 patients who had the same chromosomal abnormality but surprisingly one patient had Prader-Willi syndrome and the other had Angelman syndrome. I could not understand the reason why these 2 diseases were different clinically even though they had the same chromosomal abnormality. Fortunately at that time there was an international conference concerning Prader-Willi syndrome and Angelman syndrome in Holland. I attended the conference even though I had no knowledge about genetics. I could understand none of the speeches by myself. But Professors Niikawa and Fukushima and Dr. Hasegawa who were all very famous Japanese geneticists attended the meeting. They were kind enough to teach me about some of the talks. I was so interested in the mechanism of “imprinting”. Finally, I decided to change my carrier from endoclinologist to clinical geneticist on my way back from Holland!!
Just after coming back from the conference we established Takenokonokai and the total number of the family was about only 25 at that time (currently around 600). I remember vividly how every mother was crying while they were talking about their child. (Nowadays it is rare to see such a scene because of the new development of treatment for PWS).
In 2000, we established growth charts of height and weight of Japanese PWS. In 2002, we got the approval for using GH for PWS and reported the satisfactory effect of this treatment. In 2005, we published the causes of death in PWS and in 2006 reported scoliosis in PWS, and in 2007, we proposed a reasonable starting age of GH in PWS and in 2008, we reported the frequency of severe scoliosis in PWS. All these works were completed with the cooperation of researchers and the members of Takenokonokai.
I believe that the political pressure of a patient support group like this is extremely powerful. Such power is definitely stronger than everybody in Takenokonokai thinks. I heartily hope that we Takenokonokai does not lose this power by struggling too much between us about trivial issues. Loss of unity of Takenokonokai means loss of patients’ happiness.