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Huntington's Disease Youth Organization

HDBuzz Interview

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

HDBuzz is a fantastic website that launched in January 2011. We had a chance to interview Dr Ed Wild, a co-creator of HDBuzz. We thank the Scottish Huntington’s Association for allowing HDYO to use and expand on this interview.

What is HDBuzz?

Ed Wild

Ed: HDBuzz is a new internet portal for bringing the latest news in HD research to the people who need it most - people from HD families, people with the HD gene, people at risk and their friends and relatives. It’s run and written by scientists working on HD, in plain language we hope everyone will understand. We believe that knowledge is power, and that science isn’t finished until it’s been heard about and understood by the people it’s for. Scientists get a little bit closer to treatments for HD every day, but for people waiting for those treatments to become available , we realise it can feel like nothing’s happening at all. HDBuzz aims to give people hope, by giving them lots of little things to hope for.

Who is HDBuzz for?

Ed: HDBuzz is for anyone affected by HD, whether they’re at risk themselves, or a friend or relative of someone with HD. All our articles are written in plain language that’s easy to understand, and we avoid scientific jargon. You could say, “we have PhDs… so you don’t have to”. We’re sure that doctors, nurses and other professionals will also visit the site, to stay up to date with the latest research.

Why did you call it HDBuzz?

Ed: Well the HD bit is obvious… right? And buzz means gossip or excitement. HD research is really exciting because virtually every day, scientists discover something that moves us closer to effective treatments for HD. Until now it’s been hard for non-sciencey people to hear about those exciting steps forward. Plus, our computer guy, Marc, REALLY likes bees.

What is the HDBuzz web address?

Ed: The HDBuzz portal is at www.hdbuzz.net. But HDBuzz isn’t just a traditional website - all our content is totally free to use and share, so lots of people will access our HD news by email or through social networking sites like Twitter, Facebook and Google Buzz, or the forums and news pages of existing HD community sites. Anyone with a blog, twitter feed or facebook account can publish HDBuzz content!

Does it cost anything to view HDBuzz articles?

Ed: Nope. HDBuzz is totally free to use and share, and always will be.

What 3 websites will HDBuzz to better than?

Ed: Well, we hope that HDBuzz content will be used on all the main existing HD community sites, so that will make all the HD sites amazing! But since you asked, HDBuzz will be better than Google, eBay and ratemypoo.com combined.

If HDBuzz was someone famous, who would it be and why?

Equation

Ed: Justin Bieber, with the brain of Stephen Hawking and the mouth of an owl.

If HDBuzz had a facebook page, how many friends would it have?

Ed: Funny you should say that - we do have a facebook page - at http://www.facebook.com/hdbuzzfeed. Friend us now! HDBuzz currently gets 50,000 visits a month, not bad considering HDBuzz has only been around for a year!

Should I make HDBuzz my home page?

Ed: If you like - but chances are, your homepage is already one that can get HDBuzz news directly sent to it - Facebook, Twitter, iGoogle and your favourite HD association page will all soon be HDBuzz-enabled. Stand by for transmission…

If young people don’t understand an article on HDBuzz, is there any way for them to explain why they didn’t understand it?

Ed: Every article at hdbuzz.net has a button that says ‘didn’t understand’. Clicking that button pops up a box where you can tell us what didn’t make sense. That feedback direct from our readers is really precious, and we use it to improve our articles all the time.

Is there anything you would like to say to all those using HDYO?

Ed: You guys rock! Jeff and I are still young - that’s official - but we’ve been in contact with thousands of people affected by HD over many years. And there’s no doubt in our minds that HDYO represents something very special that’s never been seen before: the younger generation, standing and facing HD head-on, together. HDYO is proof that nothing is set in stone - to quote Gandhi, “You must be the change you wish to see in the world” - or, if you prefer, Sarah Connor in Terminator 2: “There’s no fate but what we make”. HDYO and its users have incredible strength because they’re all supporting each other, and together you’ll change the future.