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HDYO 2016 Annual Report

February 04, 2017

Huntington's Disease Youth Organization

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



Dear Supporter,

What a year! There is only one place to start for our review of 2016… youth camps. It is undoubtedly the year of the youth camps. Prior to 2016 we had run two continental sized youth camps in our time as a charity, one in Europe in 2013 and another in North America in 2015. This year we ran both a European Camp and a North American HD Youth Camp back-to-back in August. Both were very successful events as we will highlight in the report. These two camps combined is a fantastic achievement and a lot of work, but we have been fortunate enough to find a way to bring another youth camp to a new region - Australia and New Zealand, which is scheduled for January 2017 and will be just as big in terms of attendance as the other two camps. So, in summary, we have organised three continental sized youth camps that are taking place in the space of 6 months, in which over 160 young people impacted by HD from 13 countries have been able to attend camp for free and receive a wonderful experience which will benefit them when they go home. I can’t describe what that kind of impact means to me personally. To see HDYO providing such wonderful opportunities in different regions of the world is beautiful. But of course, we want to achieve more and we will be working towards that going forward.

Another interesting area this year has been the increase in contacts, we’ve had 811 as of Dec 21st, up on last year which was below 500. We’ve spent some time breaking down our contacts from the database and will present some stats from that later. But we’re really happy with the amount of people contacting us and more importantly who is contacting us – predominantly young people. We’ve done nice educational content work as well this year with a focus on the JHD area of our site, which I will mention in the project report below.

As always, but especially this year as we have received fantastic support from all our sponsors and the HD associations, all of you have been incredibly supportive of our efforts and we are so happy to be working with you all on projects to improve support and services for young people impacted by HD globally. There’s still much to do, but we (and I include the work of the associations in that ‘we’) have come a long way from 5 years ago. Thank you and we hope you will stand with us as we continue our mission.

Matt Ellison
Project Coordinator - HDYO


HDYO’s 2016 Project Review

European HD Youth Camp 2016


The European HD Youth Camp was held from Aug 7th-13th in Kent, England. We partnered with 8 HD Associations across Europe to put on the camp, and together we successfully applied for grant funding from Erasmus+, an EU funding body. We had around 45 young people attend the event, which followed our usual format of splitting time between educational and support sessions in groups, fun camp activities and the chance to connect with other young people from across Europe. It was a very busy week but also productive, with lots of challenges raised by young people which we were then able to set up plans for, in cooperation with the local association, on how to tackle those challenges that particular young person had. We had Ed Wild, Charles Sabine and two genetic counsellors visit us on different days to offer insight into their areas of expertise and knowledge. We hope the young went home feeling hopeful for the future and feedback certainly suggested that.

‘This experience has been incredibly useful for me. I found people who understood and I feel less isolated. My view of HD has completely changed. It has given me a safe space to be with my emotions and then have support. I didn’t know so many people cared. Thank you, thank you, thank you for doing what you do.’ – Camper


‘I feel really happy and lucky that I had the opportunity to be a part of this camp. I have learned a lot from each other’s experiences and stories. And I have also been able to talk with the leaders who have given me a lot of support. I have made a little family here.’ – Camper

‘So much better than I expected. I think I was lost and drowning before I came here and now I know that and know ways to change it and have a passion to do so. Great support, new relationships and methods. Would love to come back. Thank you! You are changing my life!’ - Camper

Overall feedback from the camp was 66% excellent and 34% good, all of the sessions we ran were rated a collective score of 90% excellent or good. The best stat for me is the 80% of campers who felt better able to cope when they return home, and only 2% didn’t feel better able to cope, which is very strong score and big motivation for doing camp for us. The project was marked highly by the grant provider also upon review of our final report on camp. All in all, an excellent project! We put together a camp highlights video which you can watch here

North American HD Youth Camp 2016


Euro Camp finished on the 13th August and it was a quick turnaround for us to get ready for the 19th Aug when we held the second North American HD Youth Camp. This year we saw a huge interest in the North American camp with almost 90 young people across the US and Canada applying for a place at camp. We took 55, so we had to say no to quite a lot of young people which wasn’t nice but it had to be done. However, the demand was impressive and shows the desire is there from young people when an opportunity is presented to them in the right format. A lot of those 90 were new applicants who hadn’t applied the year before. The camp was once again a success, we had talks from Jeff Carroll on HD research, genetic counsellors to inform and Lysle Turner to inspire – he conquered Mount Everest for HD this year. Feedba

‘I am so thankful that I had the opportunity to spend the last 4 days at the 2016 HD Youth Camp! I didn't know anyone going into the camp and coming out of it I've gained so much more than I could have imagined. I got to meet many young people with HD in their family who share in my struggles and are fighting for the same cause. I had great guidance with some of THE best counselors and mentors. AND I got the chance to meet some of the most inspirational people in the community! Including presentations from Lysle Turner who climbed Mt. Everest this year to raise awareness for HD and Dr. Jeff Carroll, one of the leading researchers in the field. It couldn't have been a better team of people that we had! Thank you to each and every one of you that I met and for all of the incredible amount of strength you've given me! Keep fighting!!’ – Camper


‘I have just arrived home from what I would call an amazing weekend that I will never forget. I went to an HDYO camp in Newburg, Maryland. I was surrounded by people who completely understood me and everything I was going through. I realized I have a loud and strong voice when it comes to talking about hd. I can finally say I no longer feel alone in this fight and feel so blessed to have been able to go to this camp with all expenses paid.’ – Camper

‘You and the the other leaders, volunteers, etc. who put this camp on are a real blessing to HD kids and their families. You touched our kid’s hearts and their minds and gave them something so special. What a gift you have for taking 50+ kids from all over the US who don't know each other and when they leave, they don't want to go, are thrilled to have their new friends and can't wait for next year. What an awesome job getting them to feel connected and supported so they could open up and share, or even just sit and take it all in. You give care, support and hope and that is just beautiful! I will never know what it is like to lose my father at a young age, and face the risk of potentially inheriting the same devastating disease as him, which is why I so wanted them to meet and connect with others who could, and that prayer was answered by your camp. When the kids were leaving for camp, they were unsure and concerned about going. When they returned, they couldn't have been more excited, happy, well informed, etc. I was overjoyed and grateful beyond words. I'm sure I don't fully get all the work and time it took to make camp happen, I presume it was a lot and probably not easy at times. Thank you for all you did, all the struggles you may have had, all the late nights and weekends. All your work has truly touched lives in an amazing and real way.’ – Parent of campers

The feedback stats correlate to the feedback above with over 90% of campers saying they felt better able to cope with HD in their lives after attending camp and, like the Euro camp, 100% said they would attend again if able.

Australia and New Zealand HD Youth Camp 2017


Our third camp, which is yet to take place and will technically be in 2017, but the work has all gone in this year, is the Australia and New Zealand camp. This was a project that wasn’t in our plans for 2016 or 17, but ever since our awareness events in Australia in late 2014, which were well attended, we have been keen to come back and do something significant in the region. As is often the case, we came across an opportunity to do a camp in this region and we decided to seize it. Our biggest issue was capacity as we had ended 2015 with no capacity to do more big projects than we were. However, we were able to recruit a HD youth worker from Western Australia HDA to run the project for us and HDYO would be there mainly as the support for this person. This meant we were only adding a small amount of work to our workload, aside from camp itself, and we felt able to develop the project as a result. Things then moved very quickly and we were able to secure funding swiftly and get then support of the association in both Australia and New Zealand. We set the date of camp as Jan 13-16th 2017 in Queensland, Aus. Initially we were hoping for 25 applicants as we made an estimate of how many young people would apply judging on population of the two countries combined in comparison with our North American and European camps. But we were wrong and we ended up with 50 young people applying for camp and we’ve had to secure more funding to cover the extra places. So this camp will be just as large as the other two we’ve done this year and we are so excited and happy to be bringing this event to Australia and New Zealand. Watch out in the 2017 report for full camp feedback.

JHD Content update

One of our key focuses for educational projects this year was to add to our JHD content, which was lacking in some parts. I’m pleased to say that we have added 3 new sections into the JHD area of the site, doubling the content in that area. The sections we have added include:


One highlights the challenges families can face when trying to get their child diagnosed with JHD and offers advice on how to deal with this. Another looks at the issue of invisible siblings who can become isolated as the parent(s) have to give so much attention to care for their child with JHD, we again offer advice on how to deal with this issue. The other section highlights a UK based charity which offers small grants to children with JHD in the UK which are used purely for fun experiences. This charity is looking to go global soon and we hope to promote their work further as they grow. We have another section that we would like to add but it is not quite ready yet, this one will focus on talking about JHD in the family, this will come in 2017. So far we have had a very positive response to these new sections.

JHD Video Update


As part of the additions to the JHD area we also decided to create a video on JHD, the filming for this video has been completed and we are very much at the editing stage in this process, but a video is not currently available as it still needs work, but you should expect to see this video in the first couple of months of 2017. We filmed four families and one doctor, the families had different experiences and were at different stages which will give a lot of insight to viewers about JHD. The goal is to show the reality of JHD, but leave people feeling positive about that. Not easy as JHD is such a difficult situation for families to be in and many people in the HD community don’t know about JHD, but hopefully a good educational video will help in this area. As note, we intend to put this video on the what is JHD section and use clips from the video in the other sections of the JHD area as well.

Young Couples video


This is a video I’m really happy about, we wanted to create a video to use in the relationship section that highlighted the challenges young couples face when dealing with the prospect of HD in their lives. We wanted to show that young people can have normal lives and relationships, despite the risk of HD. We wanted to show that there are people out there who accept HD. So to do this we interviewed four young couples impacted by HD and we asked them to share their experiences. Four brave couples stepped forward and the result is a really positive video on relationships which has been viewed quite a lot already, it has only been live a few months. You can watch the video here:

‘What is HD?’ Brochure Production & Dissemination


We had created a very cool ‘what is HD?’ brochure in 2014, with the goal of offering a simple and easy resource that young people can use to inform people about HD or better understand HD themselves. This year we had the brochure produced in six languages (Spanish, Po


We have started our project for the young carers video, although filming has not taken place yet as we are currently finalising the participants and locations for filming. Our goal is to highlight the challenges young people face with providing care for the person(s) in their family who have HD. This project will be completed in 2017.

Know Your Rights section

We added a know your rights section to the website so that young people can clearly see their rights with regards to HD. We had previously made a video on this subject so this section has become a good home for the video. Follow the link to see that section

Youth Service database


I’m pleased to say we were able to complete and add the youth service database to our website, this was something I mentioned last year when we were collating information from HD Associations globally about the support options they have especially for young people. What we wanted to do was make it easier for young people to find services for young people impacted by HD in their region/country. To do this we added quite a simple looking layer, which has hidden depth, to our world map, which lists the association closest to you and their contact details. So now, if a young person comes onto our site and they click on ‘local support’ which is one of the main options on the homepage tab, they will be taken to the world map and it will localise to their region, show the local HDA’s contact details, but it will also show youth service options above the HDA’s contact details. Where the depth comes in is that these options are links, so if they click on one of those youth service options they are taken to a page with all the information and contact details for that service. Personally, I think this is a really great addition that is deceptively minimal in terms of changes to our homepage or world map, but offers great ease of access for users to local services. I would encourage you to test this yourselves. We will need to keep the information for each service up to date but this is all feasible. Here’s the link.

Youth service update


The youth service in the Mid-Atlantic of the US is continuing to progress well in that region with some regional outings for young people and families that have taken place. The youth worker was again the lead for the North American HD Youth Camp which was very well run. We are receiving a lot of contacts from across the US and are now contemplating editing the youth worker role to a more virtual model that can encompass the US officially, but there is work to do on the development of this. Watch this space, we are considering this mainly because we see a demand so want to explore what we can do virtually and measure the impact of that type of support. Here are the youth service stats for 2016:

  • 310 Individual contacts supported (includes youth service, camp, website contacts). A 55% increase from 2015.
  • 45 Families supported at clinics.
  • 450 Families reached via education days
  • 3 regional youth events ran, including N. American Camp

New role development

We are considering a 3rd staff person, for a while we have been at capacity with two staff and HDYO continues to grow, as does the demand on our services by young people and families. We are in a situation now where we are at an absolute maximum on workload but there is still much to do and achieve globally, people and associations want our help in many regions and young people continue to contact us in increasing numbers for support. A 3rd staff position would allow us to do all of these things and meet that global demand. We have discussed already what role this would be and we believe the best role would be an executive director type role to help manage HDYO, this would free up my time as project coordinator which is increasingly torn between management, admin and project work – which is what I am employed to do essentially. So we would like to try and find a staff person who can take these responsibilities from me and add much more on top of that, thus helping HDYO continue forwards healthily and enabling me as project coordinator to focus completely on project work. We will keep you all updated, at the moment we are considering the role and then we will look for funding. Rest assured we won’t be asking any associations for more funding as a result of this.

Conferences and events

As always we have been busy attending events across the world for HD including EHDN in Holland, HSG, HDSA convention, many education days in the US and in the UK, and some training events also in the UK. Thank you to all of you who have helped us or requested our attendance at those events.



Our volunteer team continue to do great things, we have around 200 volunteers who change between active and inactive. They perform a number of roles at HDYO such as translations, feedback, forum support, social media, reps and the news team. They have produced some great effort and results in their work for HDYO and have represented us well globally at events. We’ve also had a lot of help with our camps when needing volunteers, our team have stepped up, thank you to all the volunteers at HDYO!

HDYO Statistical review

Traffic to the site continues to be a success story, last year we had 5.3 million page views for the year (how many pages from our site our viewed per year) and we averaged 440,000 page views per month. This year we have had 6.6 million page views and we are averaging 550,000 page views a month. We’re pleased with the figures, no new languages have been added so it is all increased traffic with the languages we’ve got.

Page views per month


HDYO Translation Progress

We are available in 10 languages and are working to bring more to our site as soon as we can. We are planning to target some languages for 2017. Views in all languages are strong.

Website Interaction

Contacts to HDYO (support messages, questions etc.)

I want to focus on the interaction levels between our users and HDYO as we have done some work on this from our database. Last year I stated that we’d seen a large increase in contacts, up from 232 in 2014 to 478 in 2015. That has now risen again to 811 in 2016 so far with a few days left until 2017 begins. Another significant increase this year which brings our total contacts over 1800 since launch.

Contacts per year


So who is contacting us and what are they contacting us for? With our data we can answer these questions quite easily. This year we have seen a huge response to the three youth camps with almost 300 contacts being about the camps or applications to the camps. Support, pleasingly, is second on the list (and first on our overall stats since launch), with over 200 contacts requiring support from HDYO in 2016 and that number is increasing annually.

Contact subjects in 2016


What about who is contacting us? Let’s look at that data below.

Demographic of our contacts


Young Adults covers 20-35 and they are contacting us the most, but we see a healthy amount of teens as well. Children is understandably lower as they are often not on our site on their own but would be with an adult. And the next one…

Who is contacting us in 2016?


69% of our contacts this year were young people impacted by HD, with a really good representation from other user groups as well contacting us. We have seen friends and partners contacts increase since we added an area to our site especially for them. Really pleasing data. Now, finally, where are they contacting us from?

Contacts by location in 2016

Here we can see that our largest account holder countries are also the ones contacting us and accessing our services with the US, UK and Canada.

HDYO Financial Review 2016


Carried over from 2015 - £22,023.61
Official Supporter Contributions - £28,216.89
Director of Youth Services Grant Funding - £74,959.09
Donations - £21,979.23
Project Coordinator Grant Funding - £31,435.51
Reimbursement - £318.16
Euro Camp 2016 Grant and HDA support - £15,480.29
Aus and NZ Camp 2017 - £30,099.37
North American Youth Camp 2016 - £31,913.81
Project Grant Funding - £18,698.55
Total income - £275,124.51



Admin - £1,935.36
Advertising & Merchandise - £5,653.43
Communications - £493.13
Postage & Packaging - £80.18
Youth Service Development Project - £70,730.35
Project Coordinator Wage - £28,262.98
Travel - £688.24
Projects - £10,727.15
Maintenance - £2,920.00
Euro Camp 2016 - £20,887.07
North American Camp 2016 - £34,677.41
Aus and NZ Camp 2017 - £20,374.54
Insurance - £1,091.37

Total Expenditure - £198,521.21


The accounts show an increase in our income due to grant funding to cover the three youth camps and also some grant funding to help with 2017 projects. Most of our expenses have gone out on the camps combined, with 37% being spent on the three camps. We still have a large payment to make for the Aus and NZ camp which will complete our spending for that project. Educational project spending was down a few thousand, but we still have one video payment to make which would account for that difference. So we are on course to spend similar project spending as previous years. Overall, we are very happy with our income and expenditure figures for 2016. Thank you to all who have supported us this year!

Thank you!

HDYO would like to thank the following organizations, groups and individuals for their fantastic support for 2016.


Thank you to the following:

  • Official Financial Supporters & Grant Funders
  • Griffin Foundation
  • Georgetown University
  • Erasmus+
  • Huntington’s Disease Association
  • Huntington’s Society of Canada
  • Huntington’s Disease Society of America
  • Scottish Huntington’s Association
  • Teva Pharmaceuticals
  • Pfizer
  • Huntington’s Study Group
  • Huntington’s Victoria
  • Huntington’s New South Wales
  • Huntington’s Western Australia
  • Huntington’s Queensland
  • AICH Milano
  • AICH Roma
  • Lega Italiana Ricerca Huntington
  • Deutsche Huntington-Hilfe
  • Huntington’s Disease Association of Ireland
  • Huntington’s Association Denmark
  • Huntington’s Disease Association of Northern Ireland
  • Huntington’s Association Chile
  • Huntington’s Association of Finland
  • Fundacion HD Lorena Huntington
  • Swiss Huntington’s Disease Association
  • Dutch Huntington’s Association
  • Dingdingdong
  • Melville Trust


Donations and contributions:

  • The Gimbel Family Scholarship donors
  • Kinga Rajek
  • JMK Solicitors (Sarah-Louise)
  • Erlend Ravna
  • Seth Rotberg
  • Mark Murphy
  • Regina Silver-Koplo
  • Foleshill Road United Reformed Church
  • Dr Fahd Amjad
  • Desirae Martin
  • In memory of Scott James
  • Gil Lewis
  • Nicole Heins - London to Brighton Group
  • Emily Breen & HD Social
  • Simon Turnbull
  • Alistair Mackenzie
  • Lindsey Meeker
  • Amanda Vosper
  • In memory of Carla Crabtree
  • Laura Crabtree
  • Camilla Boone & family
  • Tamara Miller
  • Dale Crabtree
  • Gwen Johnson
  • CPR ETC Emergency Training - Dan Schwabe
  • Avent and Huie D.D.S, P.L.C – Kellie Charpentier
  • Jared Piaggione
  • Karen Clark
  • Logan Tavern
  • Alexandra Bucci

Words can’t express how humbled we are with the donations and support we have received this year. You have been the difference between us being able to offer support to young people impacted by HD worldwide or not, and between three great camps and none. Hundreds of young people have been supported directly by HDYO thanks to your help. Thank you!

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