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Mid-2015 Update from HDYO

July 28, 2015

Huntington's Disease Youth Organization

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July 28, 2015


Well, we are just over a half way through 2015 now and I suppose the usual comment to make is how quickly the year has gone by so far! Let’s have a look at what we’ve been up to and what’s coming up on our workload as we head towards 2016.

We’ve been working very hard for the first 6 months on the North American Youth Camp, which we have spoken about previously so I won’t touch on it much. We’re delighted as, in the end, we had almost 60 young people from the US and Canada apply for the camp, of which around 45-50 are now attending the camp in August. We didn’t say no to anyone, things worked out naturally which was nice as 45-50 was our max with our camp budget. Camp itself is only 6 weeks or so away and I am really excited about it. I am already anticipating it will be a success and we’ll be looking ahead to doing the 2nd North American Camp in 2016, with perhaps more places for young people.

As project coordinator I’ve been focusing my time on the website content so far this year, with a number of new educational sections being added to the site this year including a section for talking to friends and family about HD, an entire new area of the site for friends and partners to benefit from, and some revamped sections with new videos and content. We will be looking to add some new JHD content towards the end of year as well as a database of global HD youth services so families can see what services are available for young people in their region.

The main project for me this year is HDYO Land, a massive children’s project we’re pretty excited about. We’ve known since we launched that educational resources for children impacted by HD are relatively non-existent, and now we know what we want to do to fix that gap: HDYO Land. It’s an interactive program that kids, with their parents, will be able to use to learn about HD in a way that will be engaging for children. We will be using illustrations, voice actors and program developers to create a resource that I hope will completely change the way children learn about HD. HDYO Land is a fictional place full of charismatic characters who will guide the children through various areas of HDYO Land, in which they will learn about a specific aspect of HD such as what it is, or how you get it. It’s by far the biggest educational project we have ever done both in terms of time put in and cost. It has been worked on all year, content and feedback has been completed and now we are at the stage of development. We’re hoping to launch HDYO Land in September, but that will be dependent on the progress of the developers. They’re doing a great job so far though and we are excited to see this project take shape!

I am pleased to say that we look likely to apply for funding to host a European HD Youth Camp in 2016, at a location yet to be decided. We’ve been involved with the European camp for a number of years and hosted it in 2013, but the event has been unable to take place for the past 2 years due to funding options being limited. However, we have more options now and we’re aiming to try our luck at applying to ensure there is a Euro camp for 2016, to accompany an N. American camp as well hopefully! That would be a busy time indeed! We’ll see how things go.

Finally, we’re really pleased with the level of young people and families contacting HDYO this year. It has gone up each year since we launched in 2012 and that trend is continuing again this year with almost 275 contacts so far this year from 37 countries, we’ve already surpassed the number of contacts we had in 2014. It is a pleasure to help and we thank you for trusting us with your concerns.

Enjoy the rest of 2015 and keep an eye on the HDYO site for progress! If any of the above projects interested you contact me, I’m happy to talk 1-2-1 about them.

Matt Ellison
Project Coordinator

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