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HDYO 2014 Annual Report

January 25, 2015

Huntington's Disease Youth Organization

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


HDYO 2014

Dear Supporter,

It is a pleasure to bring to you HDYO’s 2014 Annual Review. We are now approaching HDYO’s 3rd Birthday and, as I reflect on where we are now to where we were 3 years ago, it is truly remarkable to see the development and substantial progress that a largely voluntary non-profit, run by young people, has made on the Huntington’s disease (HD) community.

HDYO has continued to grow on many fronts throughout 2014 and is providing essential services for young people globally. HDYO.org page views for the past 12 months have followed the trend of increasing year on year. In December 2012 we received about 45,000 page views a month, in Dec 2013 that had increased to 250,000, and in Dec 2014, we expect to receive over 400,000 page views. Over half of the views are coming from non-English speaking users, which shows just how vital our multi-lingual approach is. Perhaps most significant for website statistics are the amount of contacts from young people and family members we are currently receiving. This has increased dramatically in 12 months, which we received just over 300 contacts from young people and family members - double what we received last year. This includes support emails, questions from the website’s question section and private support messages over social media.

This year has seen the development of a HD Youth Service pilot project by HDYO in the Mid-Atlantic of the US. Chandler Swope was recruited to develop the service at the beginning of the year and has been working hard to do the difficult task of earning the trust of young people and families in the region. As she draws to an end of year 1, Chandler has 45 young people on the youth service database and has put down solid foundations to build upon for years 2 and 3. This project is being made possible through the financial support of the Griffin Foundation and project support from the Huntington’s Disease Center at Georgetown and the Huntington’s Disease Society of America.

We have done some great projects this year including a youth camp in Northern Ireland in collaboration with the local HD Association, two awareness tours in Portugal and Australia, new additions to the website including the emotional but hugely insightful Young people impacted by HD video project. We’ve also recruited around 75 new volunteers for HDYO, with many participating in one of the two fantastic volunteer training events for the HDYO Youth Representatives project we did in Australia and North America.

In conclusion, it’s been a very constructive year that has seen HDYO branch out into face-to-face events and support in some regions. The huge contact increase with young people through the website shows there is a need for support and a space to have concerns heard. HDYO, while still young, has grown into a very respectable and professional non-profit organization, and we seem to have earned the trust of young people as they are increasingly reaching out to HDYO from all corners of the world. Looking ahead to 2015 I will be working on a huge project for the website that, if done well, will completely revolutionize children’s access to appropriate information about HD. We will also be aiming to establish a significant event in North America for young people to get professional and peer support. This is all happening because of the support of all of you, thank you for your support!

Matt Ellison
Project Coordinator - HDYO

HDYO’s 2014 Project Review

New Parent content

Our latest article for the HDYO website is the conversation starters section for the parent area of the site. This article offers parents advice on how to discuss HD with their children, with actual examples of things you could say to a child of various age groups. Inspiration for this article was found in the HDSA booklet talking with kids about HD. You can view the article here.

Know Your Rights Video

In July we went to the Scottish HD Youth Camp to recruit the young people there to be involved in a video project. The aim was to produce a fun, short video that highlights young people’s rights with regards to HD. Young people all have rights according to the United Nations Convention on the Rights of the Child, we took those rights and made them applicable to a young person impacted by HD. The result was a really nice video that helps young people understand the rights they all have.

Young People Impacted by HD Video

June saw us head to America for the HDSA Convention and it was here where we filmed perhaps our most insightful video project yet. Our goal was to highlight how HD impacts on the lives of young people by doing a series of interviews with young people at the convention and, once back home, spending a lot of time editing the interviews to cut all that footage down into one very moving and insightful video that truly portrays the challenges young people face. 21 Young people participated in this project over the course of 2-3 days during convention and their incredible bravery to be so honest about their lives was what made the video so effective. If you haven’t seen this video, I encourage you to do so, it is eye-opening.

Some feedback we received for this video:

“This is one of the best pieces that HDYO has created!”

“This video is amazing and so needed! It brought me to tears, so happy there is HDYO for these kids. Great job!!”

“Our children need to be advised and guided through the HD nightmare, HDYO thank you.”

“Thinking about sharing this video with the new middle/high school guidance counselor.”

“What a powerful video. All of the things I felt growing up but rarely voiced.”

HDYO Youth Service


As mentioned in the opening letter, with the fabulous support of the Griffin Foundation, we were able to begin a 3-year pilot project to develop a HD youth service in the Mid-Atlantic region of the US. Chandler Swope, a social worker with a wealth of youth service experience was recruited to the role and begun in January. Since then the development of the project has progressed at a steady and very positive pace, with currently 45 young people in the youth service database, 16 home visits and 1 family event arranged in that time. We’re really pleased with the position the service is in coming to the end of year 1 and it sets things up nicely for years 2 and 3 where we aim to recruit far more young people and develop a regular events calendar for peer support in the region. The project has been based at Georgetown HD clinic, who have been superb in their support of Chandler on a day-to-day basis, as well as HDSA who are partnering the project and have opened up many doors for Chandler on the ground there in the Mid-Atlantic region. Here’s some feedback so far from young people and parents that have used the service:

“I love working with Chandler and HDYO. My family has been affected by HD and they take the time to hear you and your stories. Chandler and HDYO are awesome and I would not know what I would do without them.“ – Parent

“It’s been fabulous. Everyone is so supportive.” - Young Person

“The greatest thing was meeting Chandler Swope director of YOUTH services. She talks with kids and councils them. Answers questions they may not ask us or just lets them check in. Most important helps them realize they are not alone in this, there are other kids dealing with the same.” – Parent

HDYO Youth service video

To help highlight the service Chandler recently worked on a video with some young people and families. Hopefully insight into the project through this video will encourage more young people and families to get involved as the project develops. Here’s the video link:

What is HD/JHD Brochure

I’ve just finished this project and I am delighted with the outcome. We’re often asked by young people or family members if we have any resources to hand out at events to explain simply what HD and JHD are. We decided that this was a gap in our resources so set about working on a brochure to explain HD and JHD easily and creatively to the general public and young people. See a page of the brochure (right), if you want copies of the brochure please get in touch.

New merchandise items


We’ve added a number of cool items to the HDYO store this year to accompany the two stalwarts of the store: the HDYO shirt and wristband. New items include HDYO cups, sunglasses, stress balls, keychains, balloons and yoyos. The stress balls, yoyos and balloons are all free at events. We don’t make a profit from the store items, just enough to cover restocking and postage costs. The HDYO store is purely a way for people to express themselves positively with regards to HD!

Forum Upgrades

We’ve also put some time and funds into improvements for the website, most notably the forum this year, in which we’ve made it easier for people to use the forum by adding a more effective system for replying to posts and to do additional things such as posting links and using emoticons.


HDYO Land is a massive project for kids that I’ve been working on for over a year. The goal of the project is to create an interactive program that engages with kids and teaches them about HD. Kids and their parents will be able to go on to the program, select an area of the map they want to visit and in each area they will learn about a different aspect of HD in a very creative and fun way with the help of some charismatic characters.

We’ve had a somewhat frustrating time with this project throughout the year as we put the project on hold in an attempt to get 3-year grant funding for the project, which would have been fantastic, but we didn’t get it unfortunately. So we’re back where we were at the start of 2014 which is disappointing for me personally as I’d hoped we would have phase one of HDYO Land online by this point. However, this minor setback has only made me more driven to see this project take shape and it is top of the list for 2015. Content for phase one of the project has already been written. I intend to develop the program in 2015, write phase two content and add both phase one and two content to the program ready for kids and parents to utilise by the end of next year. I hope we can report back very positively next year. It is so important we get this project right as it has the potential to be an absolutely incredible resource for parents and children to learn about HD together. There is no resource like this for children at the moment, nothing comes close to what we are trying to accomplish here.

Northern Ireland HD Youth Camp


This summer we collaborated with the HDA for Northern Ireland on the first ever HD Youth Camp for young people impacted by HD in Northern Ireland. The association organized the camp and funding for it, while HDYO facilitated the camp, organized the schedule and did the educational sessions and workshops. The result was a very successful youth camp with around 30 young people participating in a 4 day camp that included lots of fun activities, educational sessions and opportunities for peer support. Feedback for the camp was very positive and plans are in place to do similar in 2015.

Portugal Tour

In October I spent a long weekend in Portugal at the invitation of the Portuguese HDA, who had arranged two family events in Lisbon and Porto, the two biggest cities in Portugal. This was in essence a little awareness tour to meet Portuguese families face-to-face and share the story of HDYO and what we have to offer as a resource for families in Portugal. The tour was a great success with strong turnouts and great feedback at both events. Including the feedback below:

Future will tell but you might have indirectly helped 2 or 3 youngsters from my family with your talk. That really takes a weight off my shoulders. So thanks again for that and for being willing to share your story with all that honesty. – Porto Event Attendee

Australia Tour

Keeping with the tour theme, we were given funding by a very generous individual in Australia on the basis that the funding was spent on awareness events in Australia to spread awareness of HDYO and engage youth in the region. This tour was longer and bigger than the Portugal trip, it was a two week tour in which we did 5 awareness events and 1 HDYO Representatives event (see below). We decided that the aim of the events, and indeed the tour, would be to leave people feeling positive and inspired. To put on a show, HDYO recruited a couple of volunteers, Kris and Lysle, who are good friends of the organization. Kris had inspired a nation by cycling and running around the UK to raise funds and awareness for HD. Lysle, who was already a HDYO rep, is the current record holder for the fastest speed climb up Mount Kilimanjaro for a South African and has his sights set on conquering Mount Everest for HD in 2015. I brought these guys along to inspire and that’s exactly what they did. In the space of 7 days we visited Sydney, Brisbane, Melbourne, Perth and Tasmania reaching around 200 young people and families in the process. Melbourne was perhaps the standout event with an attendance of 60+ on a Thursday night, but all the events were really well attended with most achieving 30+. All in all it was an incredibly successful tour in which we engaged, educated, inspired and had some great fun during the events. All under budget too! Here’s some of the feedback from the events:

“Exceeded expectations, excellent.”

“Funny, light-hearted and inspiring”

“A most inspirational evening! Congratulations to the speakers, it is great to know the great things that are happening.”

“Amazing and inspiring! Come again!”

“Brilliant, truly inspirational! We should have more of these kinds of talks at conferences”

“Very inspirational – great job. Thank you very much guys, you help us and our families to stay positive”

“Very good at showing that HD does not have to dictate one’s life. Found it very inspiring and educating.”

“Every speech was inspiring but positive to listen to. I enjoyed this event very much. Thank you!”

“Thank you so much for the HDYO website information. Will definitely use it!”

Australia and NZ Reps Event


The tour to Australia allowed us to do two things in one trip. We’d been in talks with the Australian HD Youth Alliance, a youth group for young people in Australia impacted by HD, and we had been discussing the idea of taking the Alliance under our wing and becoming one entity to make accessing support and resources easier for young people in Australia. To initiate this switch to HDYO, we invited the most active young people from the Alliance to take part in HDYO Representative training in Sydney, the weekend before the tour started. Funding for the event came from a mix of Alliance funds left over from their previous work and some of the funding for the Australia tour in general. The HDYO reps role is a relatively new role within HDYO in which we train young people to represent HDYO in their local community and to tackle social stigma through positive engagement. We did the first training in Europe November 2013. The Australia event was the third training event, as we have also done an event this year in North America (see below). By this point we have used feedback from previous training events to perfect our approach and the reps training event was a great day of creativity, fun , inspiration and positivity as people came together to share ideas and work on how to engage with their communities. Some feedback from the event:

“Look forward to being a HDYO Rep!”

“Had such a brilliant time, wish it could have been longer!”

North American Reps Event

The other HDYO Reps training event took place in Minnesota in April with the generous support of Teva. We invited 20 young people from across the US and Canada to attend and take part in learning more about HDYO, the NYA and YPAHD. We made a video to highlight the reps project.

At the other training events, feedback was excellent and young people were very enthusiastic about being a HDYO rep:

“What an amazing weekend at the HDYO Rep training in Minneapolis! It's inspiring to spend time with a group of such talented, intelligent, amazing individuals who are spreading awareness and support for those impacted by Huntington's Disease.”

“You all did wonderful at making an informational, but welcoming atmosphere”

“You guys are the best. Thanks for creating this community and providing the arena for this outlet”


Once again we’ve been attending events all over the place to spread awareness of HDYO. You’ve heard in detail about the Portugal and Australia awareness events, but we’ve also been at HSC, HDSA, HSG, EHDN, SHA, HDA and many more events, including some training events with professionals and medical students across the UK. One such event was a Neurological Occupational Therapists conference in which the feedback was very positive:

“Helpful and challenging”

“Incredible session!”

“Moving and inspiring. So good to be reminded of the impact on family”

Team HDYO: Expansion

The tally of volunteers now a part of Team HDYO stands at 170+, and we’ve taken on around 50-60 new volunteers in the past 12 months. I’m going to briefly highlight the new roles and changes in the team as we expand and look to offer different services to the community.

HDYO Youth Reps


The HDYO Youth Reps team has grown to around 60+ now with the two new training events in North America and Australia. The European reps have been trained for a year, the Americans and Canadians several months and Australians only recently finished training. In this time we believe the reps have reached over 1,000 people with their community work. Their work has included talks to professionals, family members, news articles, radio shows and even giving the President of Chile some HDYO merchandise! We will be working with the reps in 2015 to create some campaigns to tackle social stigma through positive engagement.

HDYO Translation Coordinator Team

For almost two years Michaela has been HDYO’s translation coordinator, working diligently to support the translation team with their work and to keep track of all HDYO translations. After seeing several languages launched successfully, Michaela is now stepping down from her role to spend more time with her family. We’d like to thank Michaela for the truly wonderful commitment she has shown in her time as translation coordinator for HDYO. She is a loved member of the team and will be staying on the team as a translator. We’re currently in the process of recruiting a new translation coordinator. Because the role is a lot of work we have decided to split the job into three roles. Working as a team of three will hopefully make for an even more efficient translation coordination team, which is no easy feat after Michaela. We have several HDYO volunteers interested in the new roles and will be training them at the very end of the year.

HDYO News Team

Finally, our newest volunteer team, the HDYO News Team! We believe that global HD news coverage could do with a boost and also we feel we need to educate young people about what’s going on in all aspects of the HD community. So, we’ve trained several young volunteers to become HDYO Journalists, essentially, with the goal of creating informative and engaging news articles that will then be sent out to all HDYO account holders and through social media. This is quite an exciting project for me, there’s a lot of potential for HDYO to offer a completely new avenue in our services through creating and disseminating news to young people, families and professionals within the HD community. Many of them are currently working on their mock article (as part of their final training) and insightful news stories should start appearing in January.

HDYO Statistical review (as of Dec 17th)

As was mentioned at the beginning, we’ve seen a steady increase in website views over the year going from just over 260,000 page views last December to almost 400,000 this November (December stats are not complete yet but we’re at 360,000 so far and it’s Dec 17th). Overall, we’ve had 6.6 million page views since we launched. We’re averaging at around 400,000 page views per month now, which is quite remarkable. We will see whether it increases again next year or stays at that level. Either way it is fantastic traffic to the HDYO site and we’ve had over 4.2 million page views this year.

HDYO Account Holder Information

We now have, as I write this, 809 account holders, an increase of 200 this year. Currently the only reason to create an account is to use the forum, it will be interesting to see if accounts increase next year with the creation of the news team, which gives people another valid reason to sign up. Percentage breakdown of our users has not changed much since we launched.

Note: Does not include unspecified accounts

Account Holders by Location

Our account holders, those that specify, are located in 45 countries with most coming from the US, UK, Australia, Canada and Germany. Some of the more obscure locations include Azerbaijan, Costa Rica, Uruguay and Indonesia.

Note: Does not include unspecified accounts

HDYO Translation Progress

The excellent work of the translation team means that we had a new language launch this year, Polish, which now brings the total number of languages available on HDYO to a 10. As you can see below (which shows language views per month) each language is being used, with Polish and Swedish being used the least. But even that equates to 15,000 page views a month which is excellent. All the other languages are around 25-30,000 page views a month, with English way out in front as you’d expect. Although, when you add the languages up we are currently receiving more views in non-English languages than English, which is actually very positive as it shows we are reaching a global audience.

Translation progress graph

Website Interaction

Forum activity

Pleasingly the forum continues to be active, although level of activity changes a lot each month. We’ve received 800 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.

Questions, support, feedback & creative expression contacts

There are many ways to contact HDYO via the website including the ‘ask a question’ section, support line, feedback email and the creative expressions area of the site. We have always received regular contacts from young people through these channels but this year has taken that to another level. As I mentioned at the beginning of the report, we received over 300 contacts this year from young people, family members and professionals from around the world. Many are young people with questions or in need of support. The increase in contacts has certainly been significant and it in turn increases demand on the service, which we can cope with. The main thing is young people are reaching out for support.

Educational Content Review


Educational content has always been a very popular aspect of what HDYO provides. In 2013 I was delighted to say HDYO educational content had been shared, using the share system on the site, roughly 7,700 times since we launched. However, this increased at an incredible rate in 2014 and we’ve now had our educational content shared almost 35,000 times since launching three years ago. Hugely impressive figures in my opinion, although I’m biased, many of the shares may be accounted for by educational systems using HDYO as a resource when teaching about HD, or kids using it to help them with their homework on the subject. It’s also clear we have a very strong following in the HD community. Given one of our main goals is to educate, these numbers are very positive.

Social Media Following

Facebook & Twitter: Both social media outlets we use now have around 7,500 combined followers, with a massive following on Facebook. 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. Sometimes they just want to send pictures of them putting a pie in the face of their parent! #HDpieintheface

Youtube: HDYO’s videos on Youtube have reached a milestone this year of over 100,000 total views! This is double what we had last year. Our most popular video is the What is HD? video we made last summer which has 17,500 views.

HDYO Financial Review 2014


  • Carried over from 2013 - £11,855.49
  • Official Supporter Contributions - £15,050.43
  • Director of Youth Services Grant Funding - £52,675.41
  • Donations - £3,710.80
  • Merchandise - £1,125.98
  • Australian Tour Funding - £8,487.11
  • Australian Reps Event Funding - £5,793.57
  • Project Coordinator Grant Funding - £25,234.92
  • Reimbursement - £1,677.36
  • North American Reps Event Funding - £6,510.65
  • Services (Northern Ireland Camp Support) - £1,540.00

Total income: £133,661.72


  • Admin - £480.04
  • Advertising & Merchandise - £5,803.20
  • Communications - £263.62
  • Postage & Packaging - £774.52
  • Youth Service Development Project - £48,554.86
  • Project Coordinator Wage - £24,721.73
  • Training - £255.50
  • Travel - £2,954.77
  • Projects - £36,912.68
  • Maintenance - £2,920.00

Total Expenditure: £123,640.92

You can see that the youth service project is a big expense for us this year, but it brings with it the chance to develop a sustainable youth service in a large region of the US. Expenditure on projects and the Project Coordinator’s wage are similar to previous years. All other expenses remain small.

Overall, another very successful year at HDYO and we look forward to improving support and education for young people impacted by HD even further in 2015.

Thank you!


HDYO would like to thank the following organizations, groups and individuals for their fantastic support for 2014. 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
  • Huntington’s Victoria
  • Huntington’s New South Wales
  • Huntington’s Western Australia
  • 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
  • Swiss Huntington’s Disease Association
  • Dutch Huntington’s Association
  • Dingdingdong
  • Melville Trust
  • Donations and contributions
  • Andrew Churchyard
  • HD Australian Youth Alliance
  • Siân Lewis
  • John McCabe
  • Kris King
  • Gwen Johnson
  • Bryan and Gail Viau
  • Megan Connelly
  • De Sousa Family

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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