Hi Folks!

HDYO's preview page is now up for people to check out and learn more about the organization, which officially launches in January, 2012.

The HDYO website is www.hdyo.org

Hope you folks like it!

Take care,
Matt.

[www.hdyo.org]



Edited 1 time(s). Last edit at 09/07/2011 03:20PM by just1moreperson.

It looks great! I'm sure it will appeal to young people! You've certainly put a lot of work into it.

I am not sure of the point the site. It's information is redundant and what does young mean? At what age do you get kicked off? How do you know someone is really young?

A worldwide website won't address specific needs or problems to someone in US vs Europe or any other country so the user will have to go to another website for specifics which is why each country currently has there own websites. So the information that will be provided on this site will be generic and to get specifics you just have to what is already out there. So what is the draw?

We were all young once and the point of a 'young' forum gives kids giving kids advice? Or it will turn into a dating site? Or will is just be a place for the young people to vent? Either way without old ones in the mix most advice of a personal nature is untested and unreliable. Why recreate the wheel when old folks have been through it? And what about the loss of parents being able to see what real life problems kids are going through so we can better understand our own youths concerns and troubles.

We all think sometimes this forum might be better if one or another group is isolated, but in reality we all need to see the full scope of problems and solutions to make the most informed decisions.



Edited 1 time(s). Last edit at 09/08/2011 06:32PM by MRO.

Wow Matt, i just looked at your link, i think it looks awesome

Thanks all

MRO - I will try to answer all your questions To some extent you are right about HDYO's material being made for a worldwide audience and not focusing specifically on country specific information. But actually, the vast majority of the content doesn't need to be region specific, and as it stands young people don't have any information about HD that's created specifically for them... there is nothing out there for them to begin with. So HDYO is creating new educational information on many, many aspects of HD that are important to young people on a worldwide scale. Once this information is on HDYO our aim is that the HDAs will use our information on their sites and make it more country specific (where necessary) when they do.

In terms of content being "redundant", I'm a little baffled as to how you've come to that conclusion when we've not even released any HDYO content yet. However, those that have seen the HDYO content (some young people, our feedback committee and translators) have absolutely loved it. And, as I type this, I am at the HD World Congress, where I've done 3 speeches on HDYO in the past 2 days to professionals, family members, HDAs and their board members. The response overall to HDYO has been absolutely fantastic, the response to our material (which I've shown on slides) has been brilliant and, in fact, I've had several HDAs come up to me in the past few days requesting to officially support HDYO financially and use our content on their own websites. So to say the content is redundant, I'll have to disagree. We've put a huge amount of voluntary hours over the past 12 months into creating our content. Last month, I was spending 12 hours a day on HDYO content alone. We take our content very seriously and the need for it (as has been proven at this conference by the great response) is most certainly there.

As for the forum, again we've not released any details about how the forum will work. You seem to have an image in your head of kids giving other kids any advice they like, with parents not being allowed to participate and no moderation. That's not the case at all. The HDYO forum will be for young people and their families (including parents) to receive support and seek advice. In fact, HDYO fully recognises that support for parents is just as important as support to the young people. So we have a section specifically for parents with content and the forum will also provide a place for the parents to seek support. Plus, young people like talking to other young people, and if they can connect with someone who has been through an experience they are either going through themselves or are about to go through, then that can be a great support system for a young person. For example, if a young adult is starting the testing process and they want to learn more about what life is like after a result (neg or pos), then they can seek support on the forum from other young adults that have been tested and this can provide great comfort to that young person. The forum will also be monitored by HDYO and will likely feature a few key well-respected elder members of the HD community who can provide support and advice when needed.

I hope I've answered all your questions, I'm always happy to discuss HDYO with anyone who wants to know more Ultimately we are working towards improving the standard of support young people impacted by HD receive around the world. Support for young people in many regions of the world is non-existant, HDYO has the potential to speed support up for these young people at a considerable pace. In my opinion, that can only be viewed as a positive direction to be going in.

Take care,
Matt.

[www.hdyo.org]

Great job Matt et al. I am sure it will be a helpful site to point to when I am teaching my kids about HD. There are many things they learn day to day, but sometimes even the most experienced parent needs another resource with kid friendly and focused activities. I'll look forward to the content when it comes out.

As far as redundancy adding another HD site, here are my thoughts:
I think that another HD focused site which may welcome new faces and get young people talking cannot be a bad thing. Would the creators of HDSA think that the Lighthouse or HDLF was redundant and somehow taking away from their purpose? Any way of getting HD info out there is good in my eyes, and as long as it is accurate, the more the merrier.

I'll join as a parent...whether I'm young or not, and I anticipate my opinions will be welcomed there just as they are here.

Patty

Thanks Patty, you most certainly would be welcomed

With regards to content being accurate, I'm glad you mentioned it because it's hugely important. To ensure HDYO's content is accurate and in the right tone, we set up what we call the HDYO Feedback Committee, which features a wide range of professionals such as researchers (including HDBuzz), health care professionals, HDAs and HD youth workers, along with family members (we recently had Nancy Wexler join the committee as well), who provide their feedback on every piece of content we produce. So our committee is more than capable of providing excellent feedback and cover every area of HD. Nothing will be used unless it is high-quality, factually correct and appropriate.

Take care,
Matt.

[www.hdyo.org]

I think it sounds awesome Matt! I can't wait to see the finished product.

I agree with Judy F.

Sent the link to my granddaughters, I hope they check it out.

Carla