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Matt’s Blog - The North American HD Youth Camp

February 26, 2015

Huntington's Disease Youth Organization

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February 26, 2015


You may have seen that on February 3rd we announced a very exciting new project: the North American HD Youth Camp! This is a brand new event available for young people who are impacted by HD aged 15-23 years from the US and Canada. I thought I would take the opportunity to blog about this wonderful new event especially for young people that will be taking place from August 24th-27th in Maryland, US.

Firstly, here are some basic details about the camp project that may interest you or your family members:

The North American HD Youth Camp

Taking place: 24-27th August

Location: Maryland, USA

Age range: 15-23

Available to: young people impacted by HD from the US and Canada

Spaces available: We have funding for 40 young people

Cost: Free (flights, camp fees and food included)

To learn more or apply go here

I’m so delighted to be able to say that we are organizing a HD youth camp for North America! This has been a big goal of HDYO’s since we started three years ago. In fact, our strategic plan has a North American camp down as a target for 2016. So we’re actually ahead of our strategic plan with this project, which is great but we’re ahead of schedule because we have the right structure in place to attempt the run and organize a camp like this - it takes a lot of work. The unveiling of the North American camp was a significant announcement. Time will tell how significant as if successful first time around, we will be looking to make it an annual event.

Why North America?

We feel that there is demand for an event like this especially for young people and that there is also potential funding available to make it happen. These two things meant we were determined to try and make the camp happen at some point.

Why a camp?

We know they work basically. There has been HD youth camps in a number of countries already. Personally I’ve been to the Scottish camp twice, the European camp 4-5 times and the Northern Ireland camp last year. HDYO has been involved in the Northern Ireland and European camps over the past couple of years. So we have experience running camps and they are incredibly beneficial for young people who get the chance to meet other young people, receive support, learn more about HD and have fun. There are other options apart from a camp, we could have done something along the lines of a Young Adult conference, which again is a format used in other countries (England, Germany and Sweden) have done young adult events with plenty of success. But we felt that North America needed a camp more than a conference, as conferences are already available through HDSA and HSC, both of which provide a youth day which are currently the only opportunity young people have to meet other young people. These conferences have a family environment, whereas in my opinion a camp offers a very different environment – one that is especially for young people. This is why we decided on a camp and also why we decided on an age range of 15-23, it’s an age group who may not have had any opportunities to attend anything before. But also these young people are in the age range where they’re thinking about their risk and making tough decisions in their lives.

How we got to this point?

Several months ago we felt that we had reached a point where we had the resources to run a youth camp in North America on top of all the other projects we already do each year. Camps are not cheap and we wanted to fund it so that young people and families did not have to pay anything. So we went looking for funding. Teva, who had supported us on a project last year, were really interested in the camp project and we approached them for the main funding to run camp. Thankfully, we were successful in getting those funds. Once we knew we had enough funding to run a camp we went to HDSA and HSC to get them on board with the project. Both agreed to support the camp and HDSA went a step further and provided extra funds to support several more places for camp. That funding on top of Teva’s funds means we had enough places for 40 young people from across the US and Canada to attend the camp.

What will camp be like?

Chandler, HDYO’s HD youth worker in the US, has selected a great location at a good price, which will mean the young people have lots of fun activities to do each day! Aside from all the fun activities camp gives young people a chance to attend educational HD workshops led by professionals from the HD community. There will also be opportunities for young people to share their experiences with each other and receive support from the excellent staff team we have put together for camp. It will be a fantastic time but also a wonderful opportunity to discuss HD in a very supportive environment. Any young person or parent/family member reading this who is unsure about camp, I could not recommend camp highly enough. It’s an experience that will not be forgotten and can provide a lot of strength and resilience for when these young people head home.

Final message

This is a pilot project for us; we want to see if young people and families have a desire for a camp in North America. If they do then we will look to make the camp an annual event and who knows, we may look to expand the number of places available. As I write this, with applications having been open for 2 weeks, we’ve already had a strong response with applications. This seems to suggest a definite demand and need for camp but we won’t know for sure until we close applications at the end of April and see how many young people have applied. An important note for all young people thinking of applying, all applications will be reviewed after the end of April deadline and then a decision on the 40 places will be made based on need and previous opportunities. So I would encourage any young person who wants to go to camp to apply and keep your fingers crossed for the early May when we will be letting people know if they have a place or not. Whether you apply first or last does not matter. Just make sure you apply if that’s what you want to do.

I hope the camp is a great success and we can keep this event on the calendar for the foreseeable future! If anyone has any questions about camp just let me know: matt@hdyo.org

Matt Ellison
Project Coordinator

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