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|JHDN's primary goals is to provide and share information on the latest researches and resources on HD, through the internet activities.|
|１．To run and update the JHDN website and the JHDN listserve|
|２．To liaison with other HD societies,i.e.WFN/IHA for the latest information on the development of the researches around the world.|
|３．To translate and distribute the documents and publications from other countries for Japanese readers.|
|４．To distribute the newsletters (once in a year), the short news letters (fax or mail) to HD families and those who are interested.|
|５．To organize HD family meetings for informal talks and discussions.|
|JHDN's recent progress|
JHDN newsletter No.2 was released. Sorry! Written in all Japanese! Kaori had an opportunity to talk about Huntington's Disease in Japan at the Massachusetts General Hospital.
left: JHDN Newsletter No.1 and No.2 right: Dr.Jang-ho Cha of MGH and Kaori
JHDN spring tea party was held in Osaka and Tokyo. This was the first opportunity to see members of the listserve. At the Osaka setting, 19 participants joined including 2 patients. At the Tokyo setting, 9 joined including Professor Ichiro Kanazawa of Tokyo University. Everyone was really pleased to see each other. Most of participants thought the impression to each other we got from the cyber space was not different. We discussed the future of JHDN--where we should go. What we will do in the following year as follows;
1. The president will change from Kaori to Yuki MIYAOKA, who lost her HD father. But for the time being, Kaori supports Yuki as a co-president.
2. One at-risk lady will issue short newsletters for people who don't join the listserve or who don't have PC. She will send them by fax or mail.
3. We will send a letter to the Ministry of Health, Labour and Welfare, to change the old-fashioned disignated name "Huntington's Chorea" to"Huntington's Disease".
4. We will edit a caregiver's guide to HD. Most of caregivers know how to care PHD far more than physicians and nurses who never experienced PHD. We would like to record caregivers' experiences, success and failures.
Kaori, founder and president of JHDN, has joined the thanksgiving dinner party at Guthrie Center. Jim, who organized this event, appointed her to give a short speech without any notice! Wow! It was a great event to remind us the goal of scientific research and the care of PHD who already suffered this disease. The detail of the event and Kaori's photo are updated on the Marsha Miller's report, Huntington's Disease Advocacy Center. Kaori also reported the event in Japanese.
We are very pleased and excited to receive many responces from the HD family members, who are now able to interact with other HD family through our listserve. So much so that we have ended up with issuing the e-mail magazine with articles on the topics most frequently discussed between the listserve members. We shall create a new section for this e-mail magazine, for everyone else to see.
A medical school student has offered to help us gather the information on care facilities. Also, a person who lives in England is helping us out for translating our website into English. We feel so fortunate about this steady expansion of links between people who support us. It's a wonderful world!
Launching of the JHDN e-mailing list.
It all started to happen since the Osaka version of the Asahi Newspaper mentioned JHDN in one of their articles, which led many enquiries via e-mail from the people of that region. Many lively and spirited women have joinded JHDN listserve which promisses the scene's wonderful future development.
The first JHDN Tea Party was given in Tokyo, joined by three HD families who live around the area, who are also joined by the JHDN staff members. We talked and discussed on many subjects, over great quantity of Japanese cakes and tea! We hope to organize a similar meeting soon.
The first JHDN newsletter was issued in April.
The two main articles in this issue are 1) the report from the IHA congress held in the Hague in '99, 2)introduction and profile of JHDN staff members and supporters. As we compiled this newsletter, we reminissed how we prepared ourselves for the IHA congress by studying the basic knowledge of genetics as if there were no tomorrow, how we struggled to find the way to manage the ever growing research materials.
Not many copies are left, but if you would like it to be sent to you, please send us your s.a.e. with a pre-paid stamp. The newsltter was written in Japanese only, so sorry for English readers!
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