Melissa
Patient
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Melissa

Always live life to the fullest!

10 months ago

Tell us about your experience with/connection to Huntingtons Disease

“My mother had HD, and she passed away when she was 46 years old. We were all very sad, but my sister and I had to get tested since HD is genetic. So my older sister got tested and she didnt have it. I tested for it and I tested positive...”

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Displaying 1 - 10 out of 13 comments
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  • Shelly

    2 months ago

  • cathy

    I hope you and your family are well. I am going to direct you to the wearehd.org National Youth Alliance community. on the community page of the NYA there is as applacation to join the nya officially and directions on how to join the yahoo page if desired. The NYA plans on raising money and awareness for HD. We are the first Virtual Chapter connected with HDSA, the mass part of our communications happen on-line. Being that we are all spread out all over the usa, we have goals to start national projects like fundraisers we all start at the same time in our own communities and like having nya advocavy days where we go out in to our own communities wearing our hd tee shirts, buttons and bags and talk to people about hd and then get on-line and tell everyone how many people you were able to educate about this disease. We have a silent auction at the annual hdsa convention, which the money raised is split some goes to research and some goes to the NYA scholorship fund- which gives nya members who wouldn't be able to attend the convention a chance to go for free. Last year their were 26 full and partial scholorships given out to members to allow them to attend. we have two committee's, fundraising and silent auction and a board, that each board member can partisapate in, if so desired. we are planning to upgrade our page and site connected to hdsa.org to be able to do some really cool things. one of our goals is doing whatever we can to ensure this is the last generation with hd... another is to provide a place of love and support for anyone affeacted by hd (9-29: but we don't kick you out when you hit 29, we just put grandma or grandpa in front of your name - just kidding) I hope you join and get involved i would love to work with you on kicking HD's butt! cathy

    3 months ago

  • Rob

    Hi Melissa, thaks for the add! I hope you are well today!

    7 months ago

  • Matty

    Hiya Melissa how you been this week? Ive set up a site for my cycling trip to raise money for HD. If you know anyone who would like to sponsor me id appreciate any help i can get :) my site is www.firstgiving.com/matthewellison

    hope your happy and well :) tc.

    9 months ago

  • Shelly

    9 months ago

  • Shelly

    9 months ago

  • Shelly


    something beautiful, hope you are well.

    9 months ago

  • Shelly


    thank you for the invite, nice to meet you. come by to talk anytime. sorry for your pain and fear. shell

    10 months ago

  • violet

    where in cal do you live? I used to live in san diego. I now live in MI now.. I hope everything is well.. violet

    10 months ago

  • jenny

    Hi Melissa, it's nice to have you with us. There's lots of support here and we all understand. Jenny

    10 months ago
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