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HDYO 2013 Annual Report

January 30, 2014

Huntington's Disease Youth Organization

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


HDYO 2013

Dear Supporter,

What an incredible year it has been for this little non-profit organization. At the end of my message in last year’s review I said that we had laid down some solid foundations on which to grow this organization into something special. Well this year brought with it some special growth at HDYO, and we feel that we have built upon the foundations of last year and begun creating an extremely effective resource for young people impacted by Huntington’s disease (HD) around the world.

This year has seen HDYO recruit not one but two full-time employees: Matt Ellison as project coordinator and our newest member of the team, Chandler Swope, as a youth worker to cover the Mid-Atlantic region of the US in what is a very exciting 3-year pilot project. The volunteer team has become an organized unit containing a variety of roles for young people to engage with. Team HDYO now stands at an incredible 120 volunteers and we just launched a new global volunteer project titled the International Representatives so we are still keen to grow the team.

Website views and language availability have increased significantly in 2013. We’ve seen website views go from 40,000 in December 2012 to around 200,000+ in November 2013. Languages have gone from 3 to an incredible 9! Ensuring that our content is available for young people and families around the world. Of course, we are still working on several languages that are yet to launch. The volunteer team do a wonderful job of progressing through these translations and supporting/encouraging each other in the process.

We held our first on the ground event, the European Youth Camp, in Spain during July 2013. In collaboration with several European HDAs, HDYO put on a week-long youth camp for 40 young people from 8 different EU countries. Funding for the camp was received from the EU Youth in Action fund. Feedback from the camp was incredibly positive and we will be looking to do similar in 2014.

This year we also actively seeked to improve our work and communications with the regional HD youth groups and organizations. Resulting in good work in some regions and a new ‘collaborative call’ initiative to help connect youth groups with HDYO and also other youth groups globally.

We’ve produced some excellent content this year too. Most noteably our what is HD? Video, which explains HD in a simple, fun and creative way. It has become one of the most popular HD videos on the web and a great learning tool for young people to educate themselves on HD in a way which does not scare them. We’ve also produced some other excellent resources such as our tour of the lab and what is HDYO? Videos, and some new sections on the website for emotional wellbeing and bereavement. We continue to receive excellent feedback on our content and in almost 2 years of existence we have still not received any negative feedback on content.

It has been wonderful to watch this non-profit grow. There seems to be a genuine positivity that surrounds this organization. Whether a HDYO volunteer, a young person, family member or professional, everyone seems to be inspired by the development and the impact HDYO is having on a global community of young people. As a result HDYO is gaining momentum and respect which we hope to build on once again as we head into 2014. We want to take this moment to thank all of our supporters for their wonderful and vital support, without it we couldn’t do what we do. I’d also like to thank the HDYO team for their really inspirational effort and determination to provide the best support to young people impacted by HD around the world. You are the fuel that drives us forwards.

Matt Ellison
Project Coordinator - HDYO

HDYO’s 2013 Project Review

3 New Sections

We’ve added two great new sections to the website in recent months. The emotional wellbeing section and the loss & bereavement section. Both cover difficult topics but issues that many young people experience. Feedback so far on both sections has been very positive.

We’re also adding the Enroll-HD section to the research area of the site in December this year and hope to add to it over the coming years as we support young people’s understanding of research they can participate in.

HDYO’s Tour of the Lab Video Project

In May we took two young volunteers and a cameraman to Lund, Sweden, to visit Asa Petersen’s HD lab. We filmed our visit, interviewed researchers and had a great time learning about how research is conducted within the field of HD. There are now two very positive and educational videos available online for you all.

These are excellent videos that provide young people a rare insight into what goes on in a HD lab. One young person stated:

Euro Camp Video

In July, HDYO co-organised the European HD Youth Camp along with several European HDAs. Funding was received from the EU Youth In Action programme. 40+ Young people spent a week in Burgos, Spain, doing workshops, receiving peer support, learning about HD and having fun. We were even on the national news in Spain! The camp was a great success and HDYO will be looking to do this camp or similar again in 2014. The camp highlights video was recently made public too, so you can see how everyone got on at camp and hear from young people who participated. We encourage you to take a look.

‘Thank you for doing this video. It made me smile with hope.’ European HD Youth Camp 2013

What is HD? Video Project

During the European Youth Camp all 40+ young people spent a day working on the What is HD? video project. The plan was to create HDYO’s very own video to explain what HD is in a fun, positive and creative way that would counterbalance the amount of scary videos available on Youtube about HD. We’re delighted and very proud of how the video has finished up. If you haven’t seen it yet then I urge you to watch the link. It has quickly become one of our most popular educational resources.

We’ve received over 5,000 views for this video and sharing on social media has been absolutely incredible since its release. Here’s some feedback we’ve received on the video:

“HDYO once again is doing a wonderful job.” – Joanne

“Best explanation ever! This is what my husband James has.” – Donna

“What a fantastic little video!! Well done to all the guys at the HDYO!” – Kris

“Fantastic job! Love the moustache mishap! A fun learning lesson about the basics of HD!” – Lorriane

“It is a great video to show to friends who don't know what HD is. Thanks HDYO” – Jay

”HDYO coming up trumps again what a brilliant video.” - Heather

HDYO: What We Do Video Project

More recently, in August during the teens camp weekend in England, HDYO did another video project with young people to explain what HDYO is all about and to encourage other young people to reach out for support. This video is a simple way to inform people about what HDYO does through the very people we support - young people.

South American visit & discussions

In September, HDYO joined a group of researchers and clinicians to the town of Feira Grande to take part in an educational seminar for the local community and also to meet young people and families in that region to hear what life is like for them, and what they need or want in terms of support. It was a very worthwhile trip and gave us at HDYO plenty to think about in terms of what we can do for young people in South America. This is now a topic of ongoing discussion with Factor H, a project set up by Ignacio Munoz of CHDI, who is keen to support families and improve quality of life within South America. We anticipate possibly another trip to Columbia or Venezuela in 2014, again with Ignacio, to gain a better perspective of what is needed in a region which faces extreme poverty and where many young people in HD families are out of school. We are very keen to get involved in South America but need to be sure whatever project we do is effective for young people.

Collaboration call for HD youth groups and organizations

We’ve been keen for a while to improve communications and collaboration with all the HD youth groups and organizations worldwide. For that reason in the second half of this year we set up a new collaboration call project in which all the HD youth groups were invited to participate in a conference call which HDYO facilitated. This was a great opportunity for youth groups to connect and share experiences as groups looking to reach out to young people in their regions. It also provided an opportunity for HDYO to offer support and advice to these groups. We have since worked with a few groups on things such as getting started, web designs and documentation such as strategic plans. We hope to continue and expand on our work with the HD youth groups as we go into 2014 and already have 1-2 projects in the pipeline.

HDYO Land – Kids Educational Project (ongoing)

Although this project is ongoing, I wanted to highlight it as it is a project we’ve already put a significant amount of time into this year. HDYO is currently working on new kids content in the form of an interactive 3D program where kids and parents can engage with exciting characters and locations in order to learn about various aspects of HD such as what it is, how you get it, and the history of HD. All in a fun environment where their learning can be supported, as can their emotional wellbeing. There will even be some games for the kids to play. And they will do it all within the one immersive environment which at the moment we are naming ‘HDYO Land’ (working title). This is a massive project and most of the work this year has been around creating the content that would go into this program. Next year we will be using 2014 budget funding to actually develop the program. A developer has already been recruited and quote provided. We’re excited about this one and if done to our vision, we feel this could become a vital resource for parents looking to educate their children about HD.


HDYO has been attending many conferences, events and giving talks about HDYO, young people and HD. HDYO has been giving talks in England, Scotland, Ireland, Switzerland, America, Brazil, New Zealand, Australia, Spain and Sweden in 2013. The response to HDYO has been excellent this year and we’ve been inundated with requests to present all over the world. We would like to think this is a clear sign HDYO is providing an effective service and proving to be a valuable addition to the HD community. Feedback after all presentations has been very positive.

HDYO’s Team Review

We’ve been very busy this year expanding the HDYO team and thus increasing our ability to achieve our goals. Team HDYO now consists of an impressive 120+ volunteers. Here’s a look at the HDYO team and some of our new young volunteers in their new roles.

Meet HDYO’s brand-new official board

In January, as part of our development as an organisation that follows good practice we formed HDYO’s first board. The board is made up of 13 members: 4 Executive committee members, 3 professional reps, 3 parent reps and 3 young reps.

In the exec committee, we’re delighted to say BJ Viau has become the Chair of HDYO, with Cat Martin Vice-Chair. Brynne Stainsby is the Secretary, while our newest recruit is Emma Snow as the Treasurer. All of the Exec committee happen to be young people impacted by HD. Our professional, parent and young reps are as follows:

Professional reps: Jimmy Pollard, Rhona Macleod and Karen Keenan
Parent reps: Lorriane Sorenson, Cheri DeLargie and Martina Stephens
Youth reps: Kristen Powers, Michaela Grien and Michelle O’Brien

All the people who were invited to join HDYO’s board accepted their invite. So we have a first choice board in place who are proving themselves very capable of looking after HDYO. The board meet 4 times a year via conference call.

HDYO recruits two full-time employees

Matt Ellison and Chandler Swope

We’re delighted to be able to say that HDYO has gone from having no paid staff to finishing the year with 2 full-time employees. In April we recruited HDYO Founder, Matt Ellison, to the role of Project Coordintor. His role is to work on all HDYO projects and support the HDYO team to perform their roles effectively. This was a much needed step for HDYO this year. In our first year Matt performed this role as a volunteer, but the growth of the organization has been so fast that demand has increased considerably and in order for HDYO to continue to be as productive as possible in educating and supporting young people we needed a full-time paid project coordinator in place. So we are delighted this happened, it is only good news for everyone associated to HDYO, including those that support the organization.

Our second full-time employee comes in the form of a very exciting project to recruit a youth worker in the US. An opportunity came about to have a full-time youth worker based at the Georgetown HD Center in Washington DC. The first ever HD youth worker in the US. This was an opportunity that could not be passed up and we jumped at the chance to get involved. The result is a project, partnered with HDSA and the Griffin Foundation, where HDYO has recruited a full-time youth worker on a 3-year funded project to set up an effective youth service in the Mid-Atlantic region of the US. After a competitive recruitment process where 225 people applied for the role, we have appointed Chandler Swope to the exciting new position of HDYO Director of Youth Services for the Mid-Atlantic. Chandler will be starting her role in January and we are all looking forward to welcoming her to the team.

Both of these positions are currently funded by the wonderful Griffin Foundation whose contribution to HDYO this year has been utterly phenomenal. Their belief in what we are doing is very much appreciated and they have allowed the organization the opportunity to fully achieve its potential, which is very exciting not just for HDYO but for everyone who wants support for young people globally to improve.

Forum Supporters

Early in the year we created the volunteer role of the Forum Supporters. These are young people who are trained to respond to other young people on the HDYO forum and to moderate it effectively. Two young people, Ally and Chelsie from Canada, were recruited and trained in a counselling approach to take on the forum support role. Both have been doing a phenomenal job since, ensuring young people’s posts on the forum are being responded to in a supportive way. At a recent meeting in London which HDYO was invited to showcase our work, the forum support role was something that received high praise from those attending and we had many people enquiring as to how the process works in hopes of replicating it.

Translation Coordinator & Translation Team

We also created the volunteer role of Translation Coordinator as the translation aspect of HDYO had grown to a level where it needed an individual focused soley on it to ensure effective progress. Michaela, one of HDYO’s translators and board members, was recruited and trained to take on the Translation Coordinator role and has been doing brilliantly in her new role ever since. Michaela has overseen the launch of 6 languages in her time as coordinator so far, a fantastic achievement by her and the team of translators. The translation team in general continues to expand and is by far our biggest volunteer sub-group. We continue to look for more translators and reviewers in as many languages as possible.

Australasia Merchandise Coordinator

We also recently created a merchandise coordinator volunteer role in Australasia to meet the demand of merchandise orders coming from that region of the world. We quickly found that postage costs to this region were higher due to the sheer distance between our merchandise store stocks in the UK and the US. However, we have now trained our eager young volunteer, Shimona, to look after HDYO stock and orders for Australasia. She is very new but recently sent off her first order successfully, which we were delighted about.

HDYO International Representatives

Our newest volunteer project is the International Representatives. In which we are training young people around the world to represent HDYO and spread awareness of youth support at a local level. This is a really exciting project idea that we put into practice just recently in Barcelona when we trained our first group of reps, mainly from Europe. We received excellent feedback from the training day and now have 10 reps appropriately trained and ready to go out and spread awareness of not only HDYO, but all options for youth support in their local region. These young people can do a much better job of spreading awareness in their local community than we can. So with the right encouragement and support they can be very effective advocates. Early signs suggest this is the case, as 3 of our reps have already got themselves presentations at local events before the New Year. We aim to expand this project in 2014 with training set for North America.

HDYO: Statistical Review (stats as of Nov 27th 2013)

Website Views

Last year we received over 255,000 page views over the entire year, which at the time we were rightly thrilled with. However, we are now receiving around 200,000+ views each month! Matching what we did throughout the whole of 2012 in just one month during the latter half of this year. Views this year have been incredible. So far in 2013 we’ve had a total of almost 1.8 Million page views. Whilst page views in total since launch are now well over 2 Million – a milestone which we celebrated recently. We consider this really positive growth and interest in HDYO and our site. A number of new languages being launched on the site have certainly helped these figures, but we continue to see rises in English site views too. Showing a prolonged interest in HDYO and our content.

Views per month figures:

  • January - 52,010
  • February - 71,848
  • March - 129,590
  • April - 157,470
  • May - 167,979
  • June - 148,462
  • July - 192,448
  • August - 182,114
  • September - 275,495
  • October - 195,658
  • November (27th) - 200,716
  • Total views 2013 - 1,774,180

We are currently receiving over 200,000 views per month, 5 times what we were receiving this time last year. Truly a year of strong growth as awareness of our site spreads and we become available to more people globally.

HDYO Account holder information

We now have almost 600 account holders - people who have taken the time to sign-up and create their own account on HDYO so they can access things like the forum and receive newsletters. We’re pleased with the consistant increase in account holders but do feel this is an area we can improve in by offering even more in the coming years with regards to communications from HDYO with the users. However, these stats allow us to get a very good idea of the demographic that use HDYO’s site which is useful.

Account holders by group:

  • Young Adults - 209
  • Unspecified - 195
  • Parents - 70
  • Teens - 57
  • Professionals - 46
  • Kids - 11
  • JHD - 3
  • Total - 591

Our figures this year for account holders is very much in line with last year. We are seeing strong usage from young adults, over half our account holders class themselves as young adults. 14% Classed themselves as teenagers, 3% as kids and 1% as being JHD. Very similar numbers to last year. We expect kids to be low as many do not access the site through their own means, but will go on with a parent. Which is probably why we see very healthy figures for parents, with 18% of our account holders classing themselves as parents. With the remaining 11% being professionals, which is again very positive. The use of HDYO by parents and professionals is highly valuable in ensuring more young people are made aware of HDYO globally and we continue to receive strong support from both sub-groups.

If we take a look at account holder locations we can gather similarly strong indications of where people are using HDYO from.

Complete list of locations for HDYO account holders:

  • Unspecified - 187
  • USA - 104
  • UK - 94
  • Australia - 32
  • Canada - 25
  • Germany - 24
  • Netherlands - 16
  • Belgium - 8
  • France - 8
  • Sweden - 8
  • Norway - 8
  • Ireland - 7
  • Spain - 7
  • Portugal - 7
  • New Zealand - 7
  • Poland - 6
  • Brazil - 6
  • Italy - 5
  • Denmark - 4
  • Argentina - 3
  • Peru - 2
  • Uruguay - 2
  • India - 2
  • Azerbaijian, China, Switzerland, Venezuela, American Samoa, Cape Verde, Chile, Columbia, Finland, French Polynesia, Guatemala, Indonesia, Jersey, Liberia, Malta, Mexico, Oman, Pakistan and Russia - All 1

What these stats reveal is the global user base HDYO has. With account holders from over 40 countries around the world. We are also receiving contact from young people in various countries previously unheard from such as Oman, Bolivia and Sri Lanka.

HDYO Translation Progress

Language graph

Translation progress has been phenomenal this year. We’ve gone from being available in 3 languages at the start of the year, to ending it with an impressive 9 languages to view the HDYO website in. The new languages include Norwegian, Portuguese, French, Swedish, Italian, and Dutch. They join German, Spanish and of course English. Our website has truly become a multi-lingual resource. This is all down to the wonderful work the translation team at HDYO have done, they are our biggest volunteer team and they work incredibly hard to ensure languages get launched.

Their hard work certainly pays off too. Above are the stats for language views in November 2013. We can see that Portuguese, German, Spanish and Norwegian all currently receive over 15,000 views per month. In fact, all the languages receive very healthy viewing figures despite some languages only recently launching, which is again confirmation that HDYO is reaching a global audience.

HDYO Website Interaction

In terms of young people interacting on the HDYO website the positive trend set from last year has continued.

Forum Acitivity

We’ve now received over 650 forum posts since launching, with 250+ of those coming this year. The forum is a challenge to keep active but we have found a good system and young people seem to enjoy sharing their experiences there.

Support emails to HDYO: 30+

We continue to receive support messages from young people around the world looking for help. Our support button is available on every page of the HDYO website. Support emails tend to be the more serious messages like the example below.

‘My mum passed away last year with a 14 year fight with HD . I honestly look up to my mum so much how she fought a tough battle every day . But to be completely honest I reckon the only word that sums up how I feel is scared , I'm scared of what might happen and I always ask myself those what if questions , what if I never get married , what if I pass it on to my children , what if I never have children.’ – Young person from New Zealand

‘I am desparated because my mom and my aunt are suffering from HD. There is no site knowlegble about HD in Bolivia and I am very sad seeing how the disease progresses without being able to do nothing for them. Please, help me.’ – Young person in Bolivia

All messages for support are responded to appropriately by HDYO.

Feedback emails to HDYO: 50+

Many young people contact us via our feedback email, wanting to let us know how they feel on our site. Like the two examples below.

‘Lovelovelove HDYO so far!!!!:D I especially love how it keeps reminding me that someone is there to listen. It's really nice. Thank you so much ^-^’ - Young person from the USA

‘Hiiii! I just really wanted to sign up so I know I have somewhere to go when I feel down:)’ - Young person from England

Questions sent in via the ‘Ask a Question’ section: 60+

Young people are able to send in their questions to HDYO’s panel of experts via our ‘ask a question’ section which is available on the HDYO homepage. This is a very popular way for young people to seek quick answers to aspects of HD they are not quite sure about.

‘Is there any support groups around my area as I'm finding it really hard to cope with my dad having HD?’- Young person in the UK

‘Is it true that the more CAG repeats you have, the earlier you get symptoms?’ – Young person in England

Creative materials sent in to HDYO: 15+

Our creative section provides young people a chance to showcase their talents and express their feelings about HD. This year we received a wonderful poem from a young person in Germany.

If I could do something
To you again, to put a smile on the lips,
Believe me, I would do it.

If I could do something
Around your eyes again to bring to light,
Believe me, I would do it.

If I could do something
To give you even one day without fear,
Believe me, I would do it.

If I could do something
To you again to give you the feeling that you are strong and can do anything,
Believe me, I would do it.

If I could do something
In order for a day to exchange with you the body,
Believe me, I would do it.

If I could do something
To make you healthy
Believe me, please believe me!
I would do it ...

Clara, Germany

I think you will agree these young people are a talented bunch.

Educational content review

Our educational content continues to be shared via social media, emails and other means at an incredibly rapid rate. Sharing on the site is currently 8 times more active than last year, which is very positive. Below you can see how many times each educational section has been officially shared (either via email, facebook or other social media) by users of HDYO. Content has been shared 7,772 times through our share button on each section since launching less than 2 years ago.

Educational sections shared:

  • Being a young carer - 931
  • What is HD? - 842
  • Genetic Testing - 779
  • Being at risk - 663
  • Living in a family with HD - 625
  • Relationships - 476
  • Visiting a care home - 466
  • Having Children - 456
  • Potential outcomes of not discussing HD - 320
  • How does HD affect people - 304
  • Feeling embarrassed - 281
  • Talking to kids about HD - 278
  • The HD Gene: Under the microscope - 270
  • HDYO’s Top Tips for talking to children - 226
  • What does it feel like to have HD? - 191
  • What you can do for someone with HD - 172
  • Young peoples’ experiences of finding out about HD - 156
  • Parents’ experiences of telling kids about HD - 98
  • Resources for JHD - 81
  • The basics of JHD - 78
  • Living in a family with JHD - 57
  • Emotional Wellbeing (new) - 12
  • Bereavement (new) - 10
  • Total - 7,772

These stats and feedback strongly indicate that we are providing excellent quality and appropriate information for young people of all ages, as well good information for parents, professionals and families with JHD.

HDYO: Social Media

HDYO has a strong presence on social media networks as often these are the places young people can be reached.

Facebook: Our Facebook page is a hub of activity and one of our strongest avenues to reach out to young people and families. We just recently passed the milestone of 6,000 ‘likes’ on HDYO’s Facebook page, which indiciates a huge social media following for HDYO. We’ve got one of the largest HD social media followings in the world and our Facebook page is a very positive environment for young people to come and learn about HD whilst meeting the community.

Twitter: We have an additional 405 followers on Twitter, which works well as a platform to share our latest news and updates live from events.

Youtube: We also have 106 subscribers to HDYO’s Youtube channel, and our videos have been watched over 47,000 times, which is extremely encouraging. HDYO is developing a strong presence on Youtube with regards to HD. In turn, we are presenting a positive approach to HD that rubs off on young people and the wider community.

When these social media figures are added to our account holder figures you can get a sense of the following HDYO has generated in a short space of time. We could state that over 7,000 people have signed-up to HDYO in some form or another since we launched in February 2012, whether that be through the website or our social media channels.

HDYO Financial Review 2013

HDYO 2013 Accounts Overview:


  • Funds carried over from 2012 - £6,216.35
  • Official Supporter Contributions - £19,594.74
  • Donations - £2,506.38
  • Euro Camp 2013 (grant & HDA contributions) - £25,628.06
  • Grant Funding (Project Coordinator Wage) - £26,105.65
  • Merchandise - £854.04
  • Reimbursement - £2,040.86
  • Total income - £82,946.08


  • Projects* - £42,611.41
  • Maintenance - £2,920.00
  • Recruitment Costs - £799.32
  • Project Coordinator Wages - £25,000.00
  • Admin - £153.14
  • Communications (conference calls) - £333.49
  • Postage & Packaging - £563.27
  • Travel - £5,016.35
  • Advertising (including HDYO materials and merchandise) - £3,696.90
  • Total Expenditure - £74,368.88

Above is our expenditure for the year. Two points of note. Firstly, the projects category includes £6,725 which has been set aside for ongoing projects that started in 2013 and finish in 2014. They have been included because the funding set aside is 2013 funding. Secondly, the grant for the project coordinator wage obviously impacts on our overall expenditure, but this is extra funding we would not have had otherwise so it in no way takes away from the project funding. Also, a key point is that expenditure on projects is up from £15,000 in 2012 to £42,000 in 2013.

We’re very happy with our figures this year and remain committed to our mission of creating projects to educate and support young people impacted by HD worldwide.

Thank you...

Finally, HDYO has received wonderful support this year from many associations, organizations and individuals. Without such support HDYO could not make the positive impact that is does. Your support is vital and on behalf of the team, thank you so much for your contributions, your trust and collaboration throughout 2013. We hope it continues into 2014 as we once again look to improve support for young people impacted by HD worldwide.

Thank you to the following:

Official Supporters & Grant Funders

  • Griffin Foundation
  • EU Youth In Action
  • Huntington’s Disease Association
  • Huntington’s Society of Canada
  • Huntington’s Disease Society of America
  • Scottish Huntington’s Association
  • Huntington’s Victoria
  • Huntington’s New South Wales
  • AICH Milano
  • AICH Roma
  • 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


  • Siân Lewis
  • Megan Connelly
  • Alis Hughes
  • De Sousa Family
  • Biofocus
  • Stanley House


Thank you! Your support makes a big difference to young people and families impacted by HD around the world.

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