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HDYO 2015 Annual Report

March 25, 2016

Huntington's Disease Youth Organization

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



Dear Supporter,

Reflecting on 2015, it has been another very positive year for HDYO. We made some great strides once again this year and we continue to see a great reaction to our work from young people and families globally.

From my point of view there have been two significant projects that we have accomplished in 2015, both have been on our agenda for a while and I’m delighted that we’ve achieved both in this past 12 months. First, we’ve seen the development of HDYO Land, a project specifically for children to learn about HD, which has just launched on our site and aims to fill the gap in educational resources for children to develop a basic understanding of HD that will serve them well as they grow up. This project was quite a feat, I’ll go into details further down the report but this took many, many hours of work and effort to bring to fruition. We’re so pleased with the result.

Second, has to be the first HD Youth Camp in North America, which we organised in August. There were 41 young people from the ages of 15-23 in attendance from across the US and Canada. Our youth worker, Chandler, run the event from start to finish, it was very smoothly done with no huge issues and what a fabulous success it was too. This event was on our radar for a long time as a big goal to aim for if we ever got in a position to organise it. Our work over the past few years helped get us into the right position to do the camp and so we set our sights on it for 2015 and came away with a fantastic experience for the young people who attended. We already have financial support to host the event again in 2016!

We’ve also seen contacts to HDYO continue to increase, with 478 contacts from young people, families and professionals into HDYO from around 70 countries in the past 12 months. Compared to 232 contacts last year this shows the level of increase we are experiencing and it will be interesting to see if that continues into 2016 or whether it levels out. It’s another very positive sign that people trust us with their concerns, young people confide in HDYO and we offer them valuable support and are able to signpost to local services too. It’s an important aspect of what we do and this is an area that seems set to grow and grow.

Thank you to everyone who has supported our work in 2015, we hope you will find the report positive and progressive, we also hope you will continue to support and work with HDYO as we grow together and provide much needed support opportunities for young people impacted by HD around the world. Thank you!

Matt Ellison
Project Coordinator - HDYO


HDYO’s 2015 Project Review



A project to engage children to learn about HD and help parents go through the process of educating their children has been on our to-do list since we launched as we could see the gap in resources in this area. In the last annual report we did at the end of 2014, in which we had to reflect on our approach to this project, I said that HDYO Land would be my main focus for 2015. It certainly was my main focus and I’m delighted to say we found an approach of an illustration-led project with some animation that worked very well and in my opinion we have produced a high-quality educational resource for children to learn about HD.

It would be accurate to say I spent the majority of my project time working on HDYO Land, it was such a huge demanding project for time and effort this year, but very enjoyable. In the first few months of the year I worked on the content for the 5 areas of HDYO Land, each area focusing on a different part of HD. Writing content for children was a challenge in itself, but once that had been done and feedback from professionals and families received, we moved on to the development stage of the project. We auditioned for a program developer, illustrator, animator and voice actors to bring our project to life. We had a strict budget so we had to be smart with our choices. Once hired we worked towards a project plan, with over 70 detailed and unique illustrations having to be created from scratch and feedback given at every stage of their development, this was a repetitive process for me but great fun watching the illustrations take shape. We also recruited 3 voice actors to cover 5 areas and several characters each, who all completed their audio work fairly early on in the process. Once the illustrations and animations had been completed, the development of the program itself could begin, with various rounds of testing and feedback.

The result is a multi-platform program that will engage children at their level to learn about HD in a fun way. HDYO Land comprises of 5 areas, each area teaches them about a different aspect of HD using cool characters and locations to ensure they are learning in a creative way. The characters will take them on a journey through their area, guiding them through colourful scenes thanks to the illustrators. They have a text box which scrolls automatically, but can be controlled by the user if they wish, so they can read what is happening in each scene. Or if they don’t want to read, they can listen to the audio narration thanks to the voice actors, which again is automatic unless you want to mute it. There are also hidden item quests for the children to interact with whilst learning, to keep them occupied and engaged in the program. The key is to provide a fun learning experience for children and a fantastic resource for parents/guardians to use to educate their children. I always think trying to explain what HD is to your children is one of the hardest things a parent has to do in a HD family. Where do you start? What do you say? Is what you’re saying accurate? HDYO Land provides parents with the resources to educate their children about HD, perhaps far beyond what they would have tried to do without such a resource available, which can only be a good thing. We know research suggests that the earlier in life you learn about HD, the better you cope later on. HDYO Land could lead to a generation of children better prepared than any other generation before them. HDYO Land launched at the very end of the year and you can view the program here You should also be able to go on to the HDYO site now and see HDYO Land promoted on the home page for ease of access for families. I highly recommend familiarising yourself with the program and sending families to the resource should they need it. HDYO Land will be multi-lingual in the future as well.

In the time since it has launched we’ve already received great feedback on the project there has even been a blog posting about HDYO Land from a HD family in Canada!

“This is incredibly brilliant, a tremendous tool to have in our day and age! What a fantastic starting point.“ - Shimona, Young Adult, Australia

“HDYO has launched the most amazingly easy kid friendly informative webpage for parents to educate children. I checked it out and LOVED it. Even showed Kyle and Christopher (Not At Risk) to help them understand where I’m coming from with my HD, they loved it and how it was an interactive story line. Just another reason why I LOVE HDYO and ALL they do for everyone. HDYO worked really hard on this so PLEASE SHARE.” – Desirae, Parent, USA

“Fantastic resource for children to learn about HD” – Jo, Parent, UK

“This is amazing!” – Gavin, Teen, USA

Mid-Atlantic HD Youth Service


The development of a HD youth service in the Mid-Atlantic region of the US, as a pilot project, is progressing very well with our youth worker, Chandler, successfully working with local clinics to gain referrals and developing a database of contacts in the area to support regional youth events that are providing opportunities for young people to build peer support whilst receiving professional support too. Here’s the current numbers on the service:

  • 169 Individual contacts supported
  • 207 Families supported at clinics
  • 100 Families reached via education days
  • 6 regional youth events ran, including N. American Camp

Chandler not only continued to develop the youth service this year but was the organiser of our North American camp too, which was a big time commitment to create. So she has done especially well to manage on all fronts. We look forward to seeing the project continue onwards next year.

North American HD Youth Camp


In August we hosted the first ever North American HD Youth Camp, a huge project, which turned out to be a huge success too. We have experience running and being involved in HD youth camps previously, having ran the European camp in 2013 and supported the Ireland camp in 2014. This was our youth worker’s first time running a HD camp and she did very well. We had enough financial support to bring just over 40 young people to Maryland, for free, and we were not sure how many young people would apply on the 1st attempt, but in the end we had 59 applications and took 41 young people. The camp itself was fantastic, I can’t say enough about how wonderful an experience it was for all of us, even the staff. We had a healthy mix of educational sessions, activities and chill time, the group work with the campers went really well and enabled campers to open up about issues that had long been locked deep inside. The camp location was beautiful and the staff there supported us nicely. I would like to take time to thank the team of staff and volunteers who gave their time for no reward other than seeing the positive impact an event like this can have on young people impacted by HD. The young people themselves were also superb, such a wonderfully supportive group who were there for each other throughout the 4 days and have formed friendships that we hope will last them all many years. The great news is we can confirm that we will be holding the camp again in 2016.


“It was far better than I ever imagined. I was nervous and hesitant going in and leaving I have never felt so liberated and prepared, happy and confident in my choices and the resources available to me. Plus I made lifelong friends.” – Camper

“Camp for me was a time to expose some things that I have repressed for years. I really got deep with my group, and was able to talk about my experiences with HD, things that my friends don't understand. I loved this camp literally so much (it was better than convention). I felt like I was really able to calm down and connect with new people who I've never met before. Honestly I would jump at the chance to attend another camp.” – Camper


“I was going to email you to see how you thought my son did. He came home pumped and was really glad he went. I can't thank you enough for having faith in both of us to allow him to attend. He connected with several of the other campers and I know it will help him with the future. When he got off the plane he looked so different. More mature. I don't know how to explain it, but there was a change. He even spent the rest of his money to bring his brother a gift back from the airport and has been kinder to his brother. Thank you and your entire staff for holding this camp for these young adults You are all doing special things by doing this camp. You may not be aware of the depth of how 4 days has changed these kids in a way that will make their lives and input matter. Thank you” - Parent of camper

“I have been working in the HD community for over 15 years.  In all this time, I have never experienced anything like the HDYO camp.  I am so honored to have been invited.  I would be back in a heartbeat and I hope we will be asked to return.”- Member of Staff Team

North American HD Youth Camp Video

Whilst at camp we took some time out to produce a highlights video with lots of feedback from young people on their time at camp. I highly recommend viewing it and seeing what we got up to and why camp was so important for these young people.

Friends and Partners Section


We have also recently launched a new area to our site specifically for friends and partners of young people impacted by HD. The area consists of some new sections especially written for friends and partners to support their journey through HD but also to increase their understanding of their friend/partner’s situation with regards to HD. We hope having their own place on our site will be of benefit to them and improve their relations too. View this new area and the two new educational sections for friends and partners here.

Relationships section V 2.0


With the addition of an area especially for friends and partners, I felt our relationships section would not fit in sync with the work we did for the new content for friends/partners. So I updated our relationships section to focus on the young person impacted by HD and their relations with friends and partners. This will mean that our content fits nicely with each other should people want to view them all. They will see different content in each section dealing with relationships.

HDYO Land Colouring in section


In addition to HDYO Land, we have a HDYO Land themed side-project joining the kids section of the site at the same time as HDYO Land, which will provide kids a chance to print out and colour in their favourite characters and scenes from HDYO Land. This is not an education piece in itself but we are aiming to engage kids in the HDYO Land project and keep them engaged afterwards by colouring in scenes they may have just watched on the program and perhaps reflecting on what they learnt during those particular scenes. Visit it here.

Enroll-HD section

We’ve added an Enroll-HD section to our research area on the site to ensure we are supporting young people’s ability to have knowledge about studies they can participate in globally. Enroll-HD is a great starting point for anybody in the HD community to get involved in HD research, we want young people to learn about this great opportunity to help their family and others. Our content provides a simple overview of the study using easy to understand information as always, we will look too do an Enroll-HD video project next year to accompany this section and plan to expand the section in the future. Visit it here.

Talking to Family and Friends about HD section

By request, from young people, we have added a brand new section on the site focused on supporting young people to talk about HD with their family and friends. Talking about HD is a huge topic for families and for young people. We already offer a lot of support to parents to talk to their children about HD and, with HDYO Land, resources to educate their children. But we didn’t offer a space for young people to learn of ways to speak about HD with their family and friends. This new section will cover that gap and hopefully encourage young people to feel more confident in speaking about HD with those closest to them. Visit it here.

Upgrade of educational sections with our new video content

We did a significant update on several of our educational sections this year by adding new video clips that link in with the content of the section. As we’ve had a number of very useful videos made in the past couple of years, with some great insight from young people, we wanted to ensure viewers could access these insightful pieces through our educational sections too. Thus we have added/replaced several video clips to our educational sections offering new insight and improving our sections too.

Youth Services Database

The youth service database is underway but not complete enough to be launched on the site yet. We are not far off with this one, we are hoping that some more information from some HDAs will arrive soon and then we will be ready to add the whole database onto the site. The idea still remains to offer a youth service database for young people and families to access when using our site. For instance, a young person located in England, if they clicked on the youth service database button they would automatically be shown information and contact details for the youth service offered by the England and Wales HDA. This should be a very positive addition to the site for our users to access and connect local services that are aimed at them. I expect the database to go live in early 2016.

Euro Camp 2016 application


I spent a week or so working on an application for funding to run a European HD Youth camp in 2016, with the support of several European HDAs who have been fantastic. I’m delighted to say we were successful with our application and will now be holding a European HD Youth Camp in England next August, just a couple of weeks before the N. American camp. It will be the first time we will run two large camps like this, which requires a lot of time and commitment, so we will need to manage that, but we wouldn’t have applied if we didn’t feel confident of doing both to a high-quality level. Several HDAs in Europe will partner on the event, and we had another 4-5 HDAs very interested in participating which was excellent to see. This is not the first Euro camp, it has been running on and off since 2010, with the last one in 2013. We are hoping to keep the Euro camp an annual event for the coming few years at least.


We’ve been attending conferences and events as usual, we also visited some of our partners in November specifically to spend time with them and improve collaborations. Perhaps the most notable conference for us was the EHA conference in Poland this September in which HDYO’s reps gave our presentation to a great crowd of families from across Europe. This event was great for us to connect with new Eastern European HDAs and begin working with them on what we can do together to support young people in their region.


The tally of volunteers now a part of Team HDYO stands at around 200, and we’ve taken on over 30 volunteers this year. The only new roles we have created are the launch of the news team and the splitting of the translation coordinator role into 3 positions; others have joined established teams such as the translation team.

HDYO Youth Reps Update


The HDYO Youth Reps team continues to raise awareness of HDYO and youth services globally, by giving presentations and brochures through their local community. In this picture (right) you can see Catherine, a rep, giving a talk about HDYO in Canada at a HD youth event.

HDYO Translation Coordinator Team

The new translation team have been in place almost a year now and have done a great job of taking over the role, which was one volunteer, but is now a 3 person team to oversee all our translation work and the huge translation and reviewer team we now have. Well done to Amanda, Liam and Maria for the great effort this year!

HDYO News Team

The newest role on the HDYO team is our news team. Trained at the end of 2014 and starting in early 2015, these young volunteers have been providing our members and followers with insightful news articles that are of interest to young people in the HD community. Their work goes out to around 10,000 people. We have over 10 volunteers in the news team, which will likely grow in 2016, and together they have produced over 25 news articles. Fantastic effort!

HDYO Statistical review

Traffic to the site continues to be a success story, views did fall slightly in the first few months but after that we saw views increase significantly into the 450,000-500,000 page views per month range, with the last few months even topping the 500,000 page views milestone. That’s half a million page views. Indeed December has been our best month yet for page views with over 550,000. We’ve not added any new languages this year so increased views are coming purely through the same languages we had last year, which seems very positive to me. We’ve had around 600,000 people visiting our site in 2015.

HDYO Account Holder Information

We now have, as I write this, 1057 account holders, an increase of 248 this year, coming from a whole range of countries. Account holders now get sent our news updates each month as well as being able to post on our forum.

Note: Does not include unspecified accounts

Account Holders by Location

Our account holders, those that specify, are located in 61 countries with most coming from the US, UK, Australia, Canada and Germany. Some worthy mentions for Pakistan, India, Chile and Peru for almost making it out of the ‘others’ list.

Note: Does not include unspecified accounts

HDYO Translation Progress

The translation team continues to grow and expand, and although no new languages have reached the launching stage yet, we are currently translating in over 25 languages. We have some new teams for languages not at the launch stage which could mean new languages for 2016. We will be pushing for new languages as we always want to increase our reach to connect with young people and offer our educational resources. Current launched languages (10) are all working well and continue to add new translated content every month. It’s a massive job and I have huge amount of respect for the work translators and reviewers do in our team. Thank you! Again, as with previous years we see clear benefits to having a language up with all of them having strong viewing figures each month.

Website Interaction

Contacts to HDYO (support messages, questions etc.)

One area that has grown hugely this year has been contact to HDYO from the community. These are often messages of support, or questions about HD through our ‘Ask a Question’ service. We have seen a steady increase in young people, families and professionals contacting us over the past few years, but this year we have had a huge increase with almost 500 contacts this year. We had 513 contacts combined in 2012, 2013 and 2014, now we’ve had 478 in 2015 alone. Why? Hard to be certain, but we’ve been around longer now so perhaps we have earned the trust of young people and families who contact us for support. We offer a global service through our translation ability so can offer a service in areas of the world where services for HD are sparse. It is probably the result of all the above and more. We are delighted but it meant our time offering support to contacts increased greatly this year on top of the work we normally do. Therefore we are watching this closely to see if it levels out or continues to increase (and if so by how much).

Forum activity

Pleasingly the forum continues to be active, although level of activity changes a lot each month. We’ve received almost 1000 forum posts since launching, with over a 100 coming this year. It is a fantastic resource for young people to explore and share their own experiences.

Educational Content Review

Our educational content continues to be shared and our content has now officially been shared around 50,000 times in 4 years. A remarkable achievement!

Social Media Following


Social Media: Our social media outlets we use now have around 9,600 combined followers, with a massive following on Facebook of over 8,000. Young people also use social media to make contact with HDYO for support or help with something in particular, which we’re very happy to offer. A lot of people share pictures on the page such as this one (right) from Holland.

Youtube: HDYO’s videos on Youtube have reached a milestone this year of over 160,000 total views!

HDYO Financial Review 2015


  • Carried over from 2014 - £10,719.75
  • Official Supporter Contributions - £15,069.37
  • Director of Youth Services Grant Funding - £60,128.21
  • Donations - £8,286.20
  • Merchandise - £493.76
  • Project Coordinator Grant Funding - £28,750.00
  • Reimbursement - £1,832.65
  • Euro camp 2016 Deposit from Euro Partners - £404.17
  • North American Youth Camp 2015 - £26,223.31

Total income: £151,907.42


  • Admin - £1,374.39
  • Advertising & Merchandise - £1,665.48
  • Communications - £386.30
  • Postage & Packaging - £282.67
  • Youth Service Development Project - £54,644.17
  • Project Coordinator Wage - £27,437.46
  • Training - £18.77
  • Travel - £3,179.09
  • Projects - £14,644.46
  • Maintenance - £2,920.00
  • Euro camp 2016 deposit - £540.00
  • North American Camp 2015 - £25,732.34
  • Insurance - £679.41

Total Expenditure: £133,504.54

As you can see almost all our expenditure goes to either providing opportunities for young people, supporting young people, developing youth services or educational projects for young people. Our general operational costs are minimal as is our travel expenses despite a trip to meet some key partners this year in the US and Canada. We are very happy with how 2015 has progressed and we are now very excited to see what 2016 holds!

Thank you!


HDYO would like to thank the following organizations, groups and individuals for their fantastic support for 2015.

Thank you to the following:

  • Official Financial Supporters & Grant Funders
  • Griffin Foundation
  • Huntington’s Disease Association
  • Huntington’s Society of Canada
  • Huntington’s Disease Society of America
  • Scottish Huntington’s Association
  • Teva Pharmaceuticals
  • Auspex
  • 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
  • Tahlia Vosper (right)and the students of Yarragon Primary School
  • Karen Clark
  • Jimmy Pollard and the Garbage Walk
  • Greg and Joe Innes
  • Emily Breen & HD Social
  • Sian Lewis
  • Marianna Ellison


An absolutely huge thank you to all of you! Your support has allowed us to have a great impact on young people’s lives and reduce the impact of HD on them.

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