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Huntington's Disease Advocacy Center - HDAC's Juvenile HD
HDAC's Juvenile HD
Our Special Kids

Welcome to our new Juvenile HD portal. This year the HD Community is shining a spotlight on the special challenges of families who are coping with children who have developed Juvenile Huntington's Disease. We are joining in that effort.

Although there are not a lot of research studies focusing just on JHD we've identified a few and they can be found on the HDlighthouse.org Web site at http://www.hdlighthouse.org/abouthd/juvenile/.

Often the most important need is to talk to someone. On HDAC we have a regularly scheduled chat hosted by Gordon who is a JHD family member. The chat is scheduled for every Tuesday at 4:00 PM EST. Click here to go directly to the chat room. (JHD Family)

Stanford University HOPES site is a good place to visit to learn more about Juvenile Huntinginton's Disease. Click here to go to the JHD Section of HOPES

With your help, by the end of this year we should have up-to-date references to resources of particular interest to JHD families. If you have any resources that you can recommend please send an email to me at stevei@hdac.org.

Other links that you will find helpful:

Vital Caregiving Documents
Articles on Juvenile HD more
    Juvenile Huntington's Weekend September 2007
    by Gordon Robertson
    It was a strange feeling going to the JHD weekend this year without my son, Michael, and his friend, Bobby.
    Read Article

    Rikki's story
    by Myrna
    When Rikki was born on the 3rd of July 1980, something inside me melted.
    Read Article

    EHDN and World HD Congress
    by Gordon Robertson
    I was looking forward to the meeting in Germany this year as I had never been to Germany before. It was more exciting for me as JHD had a much bigger part in this years agenda. It was also the chance to meet up with old friends and make some new ones.
    Read Article

    Living life to the fullest
    by Gordon Robertson
    Life is for the living. Enjoy and savor every bit. Keep your chin up and know that others are thinking of you.
    Read Article

    Swimming against the Tide
    by Gordon Robertson
    When caring for someone with JHD we encounter many problems; one of the biggest is trying to be understood. We try our hardest to explain our situations to doctors, nurses, social workers, etc., but often we are thought to be exaggerating or even bending the truth a bit.
    Read Article

    Long Journey Home
    by Gordon Robertson
    Michael's father remembers his wonderful son on what would have been his nineteenth birthday.
    Read Article

    Please tell me how to cope!
    by Jean Miller

    The following is Jean's very touching response to a mother who has asked for advice on how to cope with the emotional strain of caring for a child in the late stages of JHD.
    Read Article


 

Have a story of your own to share about JHD? Email it to us at stevei@hdac.org