Support HDYO

HDYO is the only organization who focus solely on supporting young people impacted by HD around the world. Will you help us?

<span class="translation_missing" title="translation missing: en.hdyo.land.loading">Loading</span>
Home Language and Accessibility What is HD? New to HD? Find Resources Research Ask for Help About HDYO News Videos PDF Resources Join Mailing List Kids Teens Young Adults Parents and Family JoHD Friends Professionals DONATE! Privacy Contact Us

HDYO 2012 Annual Report

February 10, 2013

Huntington's Disease Youth Organization

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


HDYO 2012

Dear Supporter,

The year 2012 has been a hugely significant one for the Huntington’s Disease Youth Organization (HDYO). Having launched on Febraury 7th 2012 this is our first year as an organization, and therefore our first annual review.

Setting out to provide a youth-led platform that not only educates and supports young people impacted by Huntington’s disease (HD) around the world, but appeals to them too, is a challenging goal. But it is a goal that I am very proud to say HDYO has made phenomenal progress with.The HDYO website, full of new, colourful, educational content created specifically for young people, has become known for its capability to connect with young people and widely praised by young people, families and professionals globally. The launch of the HDYO site made an immediate impact on the availability of support and education to young people impacted by HD worldwide and has been a real success. The site is available in 3 languages (English, Spanish and German), with more near completion, as we work hard to provide access for all.

Since launch HDYO has continued to progress and provide more resources and opportuntities for young people throughout 2012. We’ve had more success with our ‘talking about HD as a family’ video project which highlighted the benefits of discussing HD as a family, a useful resource for families looking to talk about HD with their children. More recently we released almost a dozen video interviews with young people focusing on important topics such as testing and being a young carer. These honest interviews provide valuable personal experiences and allow many young people the opportunity to realise they are not alone.

HDYO Materials such as flyers, brochures, posters have been mass produced and translated by our fantastic translation team into various languages. These materials are sent around the world to reach out to young people and families and let them know that HDYO is available and what services we provide.

We developed HDYO t-shirts and wristbands, which have been a huge hit with young people and have become a powerful tool for the youth to communicate their feelings about HD with those around them. The interaction of young people with HDYO is perhaps the most positive thing to come out of our first year, young people seem to be developing a genuine affection and trust with HDYO, and are using the service.

Throughout the year the HDYO team has grown considerably. We launched with a volunteer team of 20, we now have over 70 individuals working on HDYO, the vast majority of which are young people. HDYO has been such a success that we are expanding our board and staff to accommodate for the increased demand and ensure sustainability. This will include new roles and opportunities for young people on a global scale, and will mean more resources and support for young people using our service.

HDYO has had a very successful first year and has laid down excellent foundations to build upon. We are all extremely excited about 2013 and the direction HDYO is heading in. On behalf of the team, a massive thank you for your support and shared vision as we look to provide support and education to young people around the world.

Matt Ellison

HDYO: A year in review (as of Nov 30th 2012)

Since launching in February, the HDYO website has been viewed over 255,000 times, with views per month steadily increasing over the year. This is a promising sign that HDYO is a service young people are finding beneficial and are using regularly. Launching in German and Spanish during the second half of the year increased views, but views in English have also increased as the year has gone on. One of the major challenges when launching HDYO was ensuring young people kept using the service and these figures below certainly support the argument that HDYO has found a way to overcome that challenge.

Views per month figures:

  • February (Launch) - 16,977
  • March - 10,078
  • April - 18,047
  • May - 23,342
  • June - 19,904
  • July - 24,335
  • August - 26,469
  • September - 34,988
  • October - 40,925
  • November - 40,334
  • Total views - 255,399

We are currently receiving over 40,000 views per month, almost double the views we were receiving a few months earlier during July and August. This is very solid growth and we expect it to continue into 2013.

HDYO Account holder information

Having received over 255,000 views in our first 10 months (Feb-Nov 2012), it is important to know who is visiting the site and where are they coming from. Currently our stats system does not monitor every view to our site, which is something we are addressing for 2013, but if we look at HDYO account holder information we can get a really strong indication of who is visiting HDYO and where they are from.

Account holders by group:

  • Unspecified - 138
  • Young Adults - 133
  • Parents - 44
  • Teens - 33
  • Professionals - 25
  • Kids - 6
  • Total - 380

At the end of November we had 380 account holders, which has steadily increased as the year progressed. 138 Account holders did not divulgde information. If we exclude those unspecified and focus on the rest of the figures, they indicate that HDYO is used significantly by young adults (56%), which is not unexpected given they likely have more access to the website and are at an age where key decisions regarding HD are often made. It is esitmated teens account for 14% of our overall views which is extremely promising, and kids are lower at 2%, which is to be expected given that kids have the least access to the website. There are two massive positives to take from these figures:

  • 72% of individuals using the HDYO website are young people (young adults, teens and kids)
  • And the really significant levels of usage from both parents (18%) and professionals (10%).

The use of HDYO by parents and professionals is highly valuable in ensuring more young people are made aware of HDYO globally. Their support for HDYO is therefore vital and we appear to be receiving it.

Note: chart excludes unspecified accounts.

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

Note: chart excludes unspecified accounts.

Complete list of locations for HDYO account holders:

  • Unspecified - 138
  • UK - 68
  • USA - 61
  • Australia - 18
  • Canada - 17
  • Germany - 17
  • Netherlands - 10
  • Spain - 6
  • Sweden - 6
  • Norway - 5
  • Poland - 5
  • Ireland - 4
  • France - 4
  • New Zealand - 4
  • Italy - 3
  • Brazil - 3
  • Belgium - 3
  • Denmark - 3
  • India - 2
  • Azerbaijian - 1
  • China - 1
  • Peru - 1
  • Portugal - 1
  • Switzerland - 1
  • Venezuela - 1

These figures have to be assessed in accordance with each regions HD population, access to internet and access to languages amongst other things. But here are some key points these stats tell us:

  • HDYO is receiving huge views by English speaking countries in accordance with their population. UK, USA, Australia and Canada all have strong participation from young people, families and professionals accessing HDYO. 71% of HDYO’s account holders are from English speaking countries currently. This is not unexpected as the website has only been available in English for most of the year, but it signifies the success HDYO has had in connecting with youth in places such as the UK, USA, Australia and Canada.
  • Significant usage from Germany, which provides an excellent indication of the impact launching in a language (such as German) can have. We are seeing very strong participation from Germany since launching in German and we can hope for similar with other regions as more languages are made available.
  • And perhaps most significantly the excellent global usage of HDYO. Despite only being available in English until recently (German and Spanish are now available), we are seeing people from all regions of the world using the HDYO website. HDYO is a global organization so these figures are very promising for HDYO’s outreach to young people worldwide in the future.

HDYO Website Interaction

In terms of young people interacting on the HDYO website we see extremely positive and significant figures. Below are the posts per month HDYO’s forum has received.

Forum posts per month:

  • February (Launch) - 159
  • March - 28
  • April - 32
  • May - 24
  • June - 26
  • July - 52
  • August - 30
  • September - 39
  • October - 38
  • November - 47
  • Total forum posts - 475

One of the biggest challenges we faced this year was starting the HDYO forum and ensuring it remained active throughout the year. It is a community which requires support to grow and that is what we have done. There has been an increase in forum posts as the year has progressed which is hugely positive. The forum is working and is in a strong position as we head into 2013.


We’ve also received many emails and messages from young people and others throughout 2012. A breakdown of which can be seen below.

Support emails to HDYO: 25+

Messages sent via our support button available on every page of the HDYO website. Support emails tend to be the more serious messages like the example below.

‘My mums in a care home. I get very angry about it. My mum has changed so much, I feel like I can't talk to her any more. She was my best friend but now, one year since she left the family home I'm not close to her any more :( I see her about once a week which is very hard, I hate going to see her :(

I don't have many people to talk to, no one really understands. My friends give me support but they don't really know what I feel like. I have never talked to my father about it and my sister is only 8 I feel so sorry for her :( . I need someone to understand me. I hold so much in’ – Support email from young teen in the UK

Feedback emails to HDYO: 80+

Feedback emails for HDYO, usually provide feedback like the message below or is used as a way for people to contact us about helping with translation work and other areas of HDYO.

‘I just want to say a personal thank you for creating HDYO. It has honestly changed my life in the last year, in a good way! I feel much more informed, I pass on all new info I find out to my family and most importantly it makes me understand why my dad Keith was the way he was. If only this website was created sooner so I could know what I do today years ago, that way I could try to be more understanding and helpful to both my dad with HD and my mum who cared for him.’ – Young adult from Australia

Questions sent in via the ‘Ask a Question’ section: 40+

Questions that young people send to HDYO 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.

‘Even though you are positive for the gene, does that mean you are for sure going to develop symptoms?’ – Question from young adult in USA

Creative materials sent in to HDYO: 30+

Our creative section provides young people a chance to showcase their talents and express their feelings about HD, as the picture demonstrates.

Picture created and sent in to HDYO’s creative section by a teen in Canada:


Having made improvements to make it easier for young people to send HDYO emails, messages, questions and creative content we have seen an increase in all over the last few months of 2012. This level of interaction is an excellent start for HDYO and highlights that young people are so far using all the avenues we have created to interact with HDYO and other young people.

Educational content review

One of the main features HDYO provides is educational content about HD specifically for young people. We work hard to create appropriate information that focuses on concerns young people have with particular aspects of HD. This is a key part of HDYO and what we offer, and the stats and feedback suggest we are getting the information right. Below you can see how many times each educational section has been shared (either via email, facebook or other social media) by users of HDYO. This gives us a great indication of how useful and popular each section is.

Educational sections shared:

  • What is HD? - 133
  • Genetic Testing - 109
  • Being at risk - 107
  • Living in a family with HD - 93
  • Being a young carer - 91
  • Visiting a care home - 89
  • Relationships - 80
  • Having Children - 75
  • Feeling embarrassed - 73
  • Young peoples’ experiences of finding out about HD - 73
  • The HD Gene: Under the microscope - 55
  • Potential outcomes of not discussing HD - 53
  • What does it feel like to have HD? - 50
  • Talking to kids about HD - 48
  • How does HD affect people? - 45
  • What you can do for someone with HD - 45
  • Resources for JHD - 43
  • The basics of JHD - 37
  • HDYO’s Top Tips for talking to children - 36
  • Parents’ experiences of telling kids about HD - 36
  • Living in a family with JHD - 30

There are no real surprises as to which sections are most popular, with ‘what is HD?’, ‘genetic testing’ and ‘being at risk’ being the top three sections liked by our users. What is noteable however is that every single educational section has received significant likes and approval from young people, families and professionals too.

‘HDYO is amazing because you can read all the facts about HD without reading or seeing something that you really don't want to see! or something that is inappropriate.’ - Young adult in the UK

When referring to HDYO… ‘they ask the sort of questions that I think about…’ – Teenager, Canada

‘Just wanted to say well done on the HDYO website. I’ve found it a really great reference tool when working with young people and parents. Just wanted to take a minute to say thanks for your hard work in it all, it is making a difference to the people I work with.’ – David, HD Youth worker for the Scottish Huntington’s Association

These stats and feedback strongly indicate that we are providing excellent quality, useful, engaging and appropriate information for young people of all ages, as well good information for parents, professionals and families with JHD. As a note, we have several projects planned for 2013 to add even more content to the website for young people.

HDYO Translation Review

Translating HDYO’s content into as many languages as possible so it can be accessed by as many young people as possible is vitally important. This task is undertaken by our phenomenal translation team which has grown to 60+ individuals translating into 18 languages. The majority of HDYO’s translation team are young people who are able to participate through HDYO and make a difference to young people’s lives. Below is a table highlighting the overall translation progress for each language. We have ‘key articles’ (these include most of our educational sections) which must be completed before we launch. Along with this translators must also complete the HDYO website skeleton (the text that forms the basis of the website) too before being able to launch in that specific language.

Note: Some languages are not shown on this table as we have not completed sections for them yet. For example, we recently started translating into Romanian and Czech, but we haven’t received the first translated articles back yet so they do not appear on this table.

Language translation progress:

  • Language - Key Articles Comp % (100% Required to launch) - Website skeleton comp % (100% Required to launch)
  • German - 100% - 100%
  • Spanish - 100% - 100%
  • Italian - 100% - 91%
  • Portuguese - 94% - 89%
  • Dutch - 89% - 100%
  • Norwegian - 77% - 43%
  • Polish - 65% - 99%
  • Swedish - 47% - 24%
  • French - 19% - 50%
  • Danish - 12% - 24%
  • Czech - 12% - 23%
  • Hebrew - 6% - 20%
  • Japanese - 6% - 22%

The table highlights that German and Spanish have achieved the requirements to launch which is fantastic as they are two languages that allow us to reach large HD populations. It also shows how close HDYO is to launching in Italian, Portuguese and Dutch. We expect all three languages to launch in January 2013. Similarly Norwegian, Polish and Swedish are all making great progress and are not as far off as these stats suggest. We expect HDYO to become available in Italian, Portuguese, Dutch, Norwegian, Polish and Swedish in 2013, expanding our scope greatly. This is all thanks to the wonderful translation team and our translation checkers too who check all translations before being made public.

We know from the figures on German views that launching in a new language has a significant impact on overall website views and opens up HDYO to a whole new community. This is shown on the chart below which highlights website views by language for the month of November. This chart is taken straight from the HDYO website, so we are unable to provide percentages for this, but it is clear that German and Spanish are making up a sizable amount of HDYO’s views currently. This chart for November is very similar to previous months since launching in German and Spanish. It is a continuing trend that HDYO is receiving excellent views from German and Spanish speaking countries.

Website views for November by language:


In terms of account holders specifying their language, these are the numbers we see currently:

  • English - 345
  • Spanish - 22
  • German - 13

Dutch translation team

These numbers reinforce previous stats which show that HDYO is being used very positively by Spanish and German speaking countries since launching in both languages. But both languages have only recently launced so we expect views in Spanish and German to increase, as we do with other languages when they launch in 2013.

Overall the language progress is extremely promising, the team are making great progress and the translation task works as a wonderful participation project for young people too, which is a fantastic addition.

HDYO: Social Media

HDYO has a strong presence on social media networks. This is because young people use social media in great numbers and if we are to have a positive impact on as many young people impacted by HD as possible we must be active in social media which young people use. HDYO mainly operates on Facebook and Twitter, with Facebook proving to be a particularly successful social media outlet to reach young people globally.


In our first ten months we have amassed a total of 4,256 Facebook fans on our HDYO Facebook page. This is one of the highest fanbases for any HD page currently on Facebook, which is extremely positive progress for HDYO in such a short space of time. What is also very positive is where our likes are coming from, the table below highlights these figures and provides some interesting results.

HDYO Facebook fans based on location (top 20 countries):

  • India - 1505
  • Peru - 996
  • USA - 500
  • UK - 437
  • Australia - 88
  • Canada - 85
  • Spain - 64
  • Poland - 42
  • France - 38
  • Sweden - 29
  • Germany - 29
  • Netherlands - 25
  • Portugal - 21
  • Norway - 18
  • Italy - 18
  • Brazil - 16
  • Mexico - 16
  • Ireland - 15
  • Chile - 15
  • Argentina - 14

Our facebook audience, just like our website audience, is a global one. But very interestingly our top two countries for most Facebook fans are India and Peru, two communities which are quite untouched in terms of support. For example, India currently has no HD Association, yet HDYO has received over a 1,500 likes from people in India. This is really positive in a couple of ways as it shows HDYO is reaching a global audience, but it also may potentially provide great data for an Indian association should it be established. We want to carry out some survey studies on both our Indian and Peruvian fans to see exactly what their connection to HD is and how many of them are family members, as some may be young people that are learning about HD in school (which is something we see quite often). But this highlights the positve impact HDYO can have on the global HD community in general.

Another positive aspect of our facebook fanbase is that we are reaching the right audience with regard to age, and our gender ratio is fairly even too as the graph below highlights.

Gender and Age of HDYO Facebook fans:


HDYO’s Facebook page is a very positive environment, we post a lot of pictures of young people wearing their HDYO shirts and wristbands, research progress, fundraising young people are doing and much more. This provides young people with a positive place to get involved with HD.

Perhaps more signifcantly HDYO’s Facebook page also works as an avenue for young people to seek support, as they have the ability to message HDYO privately via our page. Many young people have chosen this avenue of interaction with HDYO to seek support throughout 2012.

HDYO Projects & Progress in 2012

HDYO has achieved some great progress this year, which is highlighted below.

Creation of the HDYO website and educational content

The creation of the HDYO website along with brand new content specifically for young people has been a huge success with young people, families and professionals worldwide. Educational content for kids, teens, young adults, parents, professionals and JHD has been highly praised and used globally. HDYO’s website has significantly increased the availability of support and educational information for young people impacted by HD.

Talking as a family about HD project

In the summer we filmed interviews with 5 families in the UK who were impacted by HD. We focused the interviews on ‘talking as a family about HD’ and each family consisted of parents & children. Each family was interviewed together and expressed their feelings and experiences of talking about HD as a family. This project highlighted the benefits of families being open and honest with their children about HD, something many families often struggle with initally. The project produced 6 videos, 5 family interviews and 1 video which encompassed the whole project. This was a very successful project and the end result was a series of videos which may provide enourmous help and insight for many families looking to discuss HD with their children.

Personal experience interviews with young people

In September, we conducted video interviews with several young people from different regions of the world. These interviews focused on young people’s experiences of particular aspects of HD such as testing, being a young carer and having children. These were again very honest interviews by very brave young people, and the results were fantastic. We now have several videos providing valuable insights for young people to view and realise they are not alone in going through such feelings and experiences. These videos are going to be used in the educational sections on the HDYO website to provide excellent personal experiences on video to accompany the supportive text our sections offer. The videos have been a big success, with our overall HDYO Youtube channel reporting over 9,500 views on our videos.

HDYO Videos

We created three HDYO videos this year to help our outreach with young people, families and professionals. Firstly we created a ‘My favourite thing about HDYO’ video which featured a dozen young people sharing what they personally like most about HDYO on camera. This video is aimed at highlighting what we offer for young people. Our second video is a message from Marcy MacDonald, a well-respected professor who works in HD research. Marcy sends a message to professionals and urges them to share HDYO with those young people and families they come into contact with. Finally, a HDYO presentation was filmed as to provide a video that explained HDYO’s origins, what we offer and how we work. These all help to state what HDYO is and reach more young people globally.

HDYO Materials

Another key aspect in reaching out to young people and families and letting them know HDYO exists are our HDYO materials. We have produced brochures, posters and banners, along with HDYO flyers which are currently available in English, Spanish and German. HDYO Flyers are sent around the world and are used to reach out to young people and families in different regions. Flyers are produced in new languages when the website launches in that language. For example, we produced German HDYO flyers at the same time as when we launched the HDYO website in German. That way people who come into contact with our flyers can go online and view the website in the same language as the flyer is in. We have produced over 20,000 flyers in 2012 and they have been a big success and vital tool in terms of outreach.

Merchandise & advertising

We developed HDYO t-shirts and wristbands, which have been a huge success with young people and have become a really powerful tool for the youth to communicate their feelings about HD with those around them. HDYO’s shirts and bands are intentionally appealing to young people and we have been inundated with pictures from young people and families wearing their HDYO gear. These items have been so successful we have had to restock for 2013 three months ahead of schedule. We sold out of shirts and gave away 500 wristbands to professionals from the HD community at the latest EHDN convention in September, which is a hugely signifcant show of support from professionals. The shirts are classed as merchandise as people must pay for them, but the wristbands are given out free at conventions, conferences and events and are classed as advertising. Their power and impact is hugely significant and acts as a way for young people to empower themselves with regards to HD. The positive impact on young people is noteworthy and substantial, it helps to create a very positive approach to HD for the young person to showcase to their family and friends. These items can truly break down barriers.

Presentations globally

Over the past year HDYO has been invited to give presentations in many regions of the world. HDYO has given many presentations in England and the USA, as well presentations in Northern Ireland, Canada, Spain, Czech Republic, Sweden in front of several hundred professionals, Germany, Poland and Australia at the World Congress for HD. This is as a result of the increasing popularity of HDYO within the HD community and we already have talks planned for 2013 including the World Congress for HD in Brazil.

Collaboration work: Ireland & N.Ireland Youth Organization

HDYO has always stated collaboration with HD Associations globally is an important aspect if we, as a community, are to provide the best we can for young people impacted by HD. We have very good relationships with all HDAs but we are keen to improve these. Significantly, in September, we were asked by both the Northern Ireland & Ireland HDAs to partner and advise them on their plans to create a youth-led HD youth service for both Northern Ireland & Ireland. This is a project we were thrilled to support and provide assistance with. HDYO will work closely with the youth-led committee to offer support and advice for the group as they continue to develop. This is a really interesting and exciting development for HDYO and we are thrilled to be a part of such collaboration.

Team HDYO’s growth and expansion

Team HDYO, Stockholm

Team HDYO has grown substantially since the beginning of the year. We now have a team of over 70 volunteers working on HDYO. This consists of our youth-led board and our translation team. Due to our success in 2012 demand on HDYO has increased substantially and for this reason we have been planning a significant expansion and restructuring of HDYO for 2013. HDYO’s board will expand, with more young people, family members and professionals joining and new board roles. We will also create a new staff team with roles, which will create more opportunities for young people and allow HDYO to offer more as a service too. The staff will report to the board and will be young people from various regions of the world, they will all receive training and support to ensure smooth transitions. Additionally we are creating a new participation project which will train young people to represent HDYO at local HD events in their region, providing great participation on a global scale and allowing HDYO to reach even more young people and families. Training for the International Representatives project will take place in two locations during 2013 and will see 15-20 young people join ‘Team HDYO’.

HDYO Financial Review 2012

HDYO 2012 Accounts Overview:


  • Funds raised to launch HDYO via fundraising and donations in 2011 - £8,262.68
  • Official Supporter Contributions - £21,127.43
  • Donations - £4,095.69
  • Fundraising - £1,380.31
  • Merchandise - £2,754.47
  • Reimbursement - £304.63
  • Total income - £37,925.21


  • Educational projects (website content, videos etc.) - £15,399.25
  • HDYO Material Creation (HDYO flyers, brochures etc.) - £2,548.64
  • Website improvements (improvements to website) - £1,800.00
  • Maintenance - £1,460.00
  • Admin - £175.27
  • Postage & Packaging - £1,214.53
  • Merchandise (Includes 2013 restock) - £3,381.78
  • Travel (majority has been reimbursed) - £627.18
  • Advertising (Includes 2013 restock) - £4,525.15
  • Total Expenditure - £31,131.80

We are pleased with our figures for our first year, however we are keen to increase the amount spent on educational content as we continue to develop the organization. This is highlighted in our budget plan for next year, which is below. The chart indicates that educational content spending will increase 10% next year to 66%, with another 20% being spent on HDYO materials, website upgrades and the Intl Reps project, with only 2% set aside for advertising and merchandise for the rest of 2013. In summary we plan to spend 86% of our budget next year on what we consider our key areas (Educational content, outreach materials and participation project opportunities), a 14% increase on 2012 which we feel is a very positive step.

For more details on our 2013 budget, see HDYO’s business plan.

Official Supporters

Finally, HDYO has received wonderful support this year from many associations, groups and individuals. Without such support HDYO could not have achieved the breakthroughs it has this year. Your support is vital and on behalf of the team, thank you so much for your contributions, your trust and collaboration throughout 2012. We hope it continues into 2013 and beyond.

Thank you to the following:

Associations, Organizations, Trusts:

  • 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
  • Melville Trust
  • Lundbeck


  • HDA Merseyside, Peterborough and Jersey branches


  • Clare Braithwaite
  • Jo Hague
  • Rhona Macleod
  • Olivia Jack
  • Arwen Moss
  • Zena Sutton and team


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

Our content is split into different groups. Choose the group that best describes your needs for more information on HD.

Kids Teens Young Adults Parents and Family JoHD Friends Professionals