Hello - I am new to this site and am looking for a suitable internet location for my 11 and 12 year old grandchildren. My daughter has been diagnosed and the kids are very computer savy. They will want to investigate on line.I want to point them in the right direction.Thanks.

There are certainly lots of things talked about here, however, most of them are adults things. You may want to review some of the posts before you "let them loose" of their own!

This is a great site, but I would be hesitant to allow children full access. First, there is indeed informaiton and experiences shared that are adult in nature and at times pretty unsensored. Secondly, the non-sensitive information can become emotionally overwhelming even to me at times, and I'm an adult. Having a place to ask questions of people who have experienced more of this disease is a great resource. At the same time, reading about other people's experiences and situations that are more difficult and serious makes me fearful sometimes as well. I have 4 children - all teenagers - and I haven't led them to this sight because I know that it wouldn't take them very long to make some associations about the future of their loved ones and even themselves. We are trying to provide the right information for them at the right time. Although I believe that information is power, when it comes to children especially, I am protective about it being dispensed in the right doses and at the right time.

Decisions about children are highly personal. I agree with Sally and encourage you to read through many posts and consider how your grandchildren might respond.

This is a great site for all that you said and what i was hoping was that someone knew of a monitered site that the kids could go to and vent on thier own level. Kind of like a kids chat room - where they could share their feelings.

There's the HDSA's National Youth Association. They have a Yahoo discussion group with a chat room.

Here's a link to the information:
[huntingtondisease.tripod.com]

Marsha - Thank you - I think that sounds like a good place to try.

Hi Edina

I'm one of the two Adults Advisors to the HDSA National Youth Alliance [NYA] that Marsha directed you too [above]. This is a FANTASTIC group of young people ages 9 through 29 living with HD in their life. It would be a good place for your grandchildren to talk on-line to their peers. However I must say this message board is not as active as other online HD groups since all of the young people are either in school, have JHD/HD or are working and/or helping care for an HD parent. However someone always responds when a message or question is posted!

You're very wise to ask about some good sites to direct your grandchildren to, learn about HD, as there are literally hundreds of them on the Internet and some can be very depressing, especially for someone their ages! From my experience with the NYA members and my own daughter when she was diagnosed with JHD, kids WILL seek out information on their own from every available resource. This can be more harmful in today's Internet-world as there are computers in every school, library and in most homes. Educating young people on Huntington's Disease, especially those at-risk, needs to be done with the guidance of a trusted-adult especially when using the Internet.

For starters for young people looking for information on HD I would suggest the Stanford University HOPES Project at this link: [www.stanford.edu]. HOPES is one of the most easiest to read/understand resources for scientific information on HD who project an overall "tone" of optimism and HOPE! This excellent website has a whole section dedicated for kids: [www.stanford.edu]

The National Institute of Neurological Disorders & Stroke [NINDS] also has some straight-forward good information on HD: [www.ninds.nih.gov]

Once your grandchildren have learned something about HD they may be interested in how other young people deal with HD in their lives. This site, "Speaking Out - Living With HD" has a collection of articles and other stories written by young people: [huntingtondisease.tripod.com]

For you, all of the resources I have for talking to children about HD can be found here: [huntingtondisease.tripod.com]

I hope these resources help, Edina!

Love
Jean E. Miller
HDSA CoE at USF
Patient Advocate
Clearwater, FL.
HD Links: [get-me.to]