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About HDYOKTYPJP1142611426 people shared this0 comments What is the HDYO?The Huntington’s Disease Youth Organization is an international non-profit organization set up to specifically provide support for young people around the world impacted by Huntington’s disease.How is HDYO run?HDYO was founded and is run mostly by young people impacted by HD for other young people. Since launching in 2012, we have developed a team of over 170 volunteers in a variety of roles, who are almost all young people impacted by HD. Our roles include:The HDYO Board – who oversee our organization Translation Team – who make us multilingual Forum Moderators – who...Find out more...
HDYO Staff TeamEveryone379379 people shared this0 commentsHere is our current staff team and a summary of what we do, please feel free to reach out to us directly.Executive DirectorCatherine Martin My role at HDYO is to oversee how we run as an organization and make sure we have enough money to do all the things we set out to do. I also make sure that the board know what is going on and that the staff and volunteers have everything they need to do their jobs.I’ve been working within the non-profit sector for over 18 years and have mainly worked in the youth and community sector with a special interest in young people impacted by trauma and...Find out more...
Translator TeamKTYPJP39873987 people shared this0 commentsHDYO’s mission is to support young people affected by Huntington’s disease all over the world. In order to provide support, HDYO produces a huge amount of informative and educational content for young people and their families affected by Huntington’s disease. All of this content has to be translated into as many languages as possible to ensure that young people have access to the information that may help them live positively despite Huntington’s disease being in their lives. The translations for HDYO are done by the HDYO Translator Team, which consists of many people who share a desire to...Find out more...
HDYO BoardKTYPJP20082008 people shared this0 commentsHere you will find a list of current HDYO board members, along with a brief introduction of how they are connected to Huntington's disease and why they work on HDYO.Matt Ellison (founder)Project Coordinator Hello! Firstly, I am pleased you have found HDYO and I hope the educational content and support on our site proves helpful for you.I come from a family that is affected by Huntington’s disease. My father was diagnosed with the disease when I was 7 years old and I grew up witnessing him progress with the condition. This had a big impact on my childhood, especially my teenage years – which...Find out more...
Contacting HDYOKTYPJP86268626 people shared this0 commentsGeneral contactFor all general inquiries or questions contact info@hdyo.orgSupportIf you would like to talk to someone with someone at HDYO for support or advice then you can contact us at the following email address: support@hdyo.org Feel free to send an email, any discussion with HDYO is confidential.What does confidential mean?Confidentiality means not telling anyone else about what you've said. It means that you can feel safe talking to us about something that is happening to you, or how you feel about something, knowing that no one else will find out.Is HDYO Confidential?We always...Find out more...
Feedback TeamKTYPJP42134213 people shared this0 commentsHDYO's main aim is to support young people affected by Huntington's disease around the world. In order to provide this support, HDYO produces a huge amount of informative and educational content for young people and their families affected by Huntington's disease.HDYO strives to provide appealing, factually correct, educational material for young people impacted by Huntington's disease. To ensure that young people are receiving the highest quality of information about Huntington's disease possible, HDYO has a Feedback Team consisting of very capable and knowledgeable professionals and...Find out more...
HDYO International RepresentativesKTYPJP17641764 people shared this0 commentsWelcome to the home of our fantastic young HDYO International Representatives! The ‘Reps’ are a new resource in our volunteer team as of 2014. They are a team of young people from around the world who are trained to do two things:Raise awareness of support options for young people and families impacted by HD in the region. Tackle social stigma regarding HD in their local community through positive engagement with the community That positive engagement can come in various forms such as spreading awareness, contacting local professionals and community members, giving talks about HDYO at...Find out more...
Sharing, Licensing and Reusing HDYO ContentKTYPJP75627562 people shared this0 commentsOne of HDYO's ambitions is to spread high-quality, educational information for young people impacted by Huntington's disease around the world. Therefore we actively encourage individuals and organisations to use HDYO material. HDYO's content has a Creative Commons License which allows individuals and organisations to use HDYO material freely for personal and non-commercial uses. Most of HDYO's content can easily be downloaded or shared. If you want to use HDYO's material on your individual or organisation's website, then you may do this without need for permission from HDYO - however, we...Find out more...
SupportersKTYPJP1050810508 people shared this0 comments HDYO would like to thank those organizations that provide their official support and annual funding for HDYO. Your support allows us to focus on improving the support available for young people impacted by Huntington’s disease.HDYO would also like to thank those individuals or groups that have donated funds to the HDYO project. Without the support of these groups and individuals HDYO would not be where it is today!Your support is instrumental and greatly appreciated by HDYO. We hope the success of our website, content, projects and events has repaid the faith you have shown in us. Thank you!Find out more...
Terms of UseKTYPJP52785278 people shared this0 commentsHDYO's Statement of IntentHDYO intends to provide support and educational information to young people around the world impacted by Huntington's disease.HDYO's DisclaimerAdvice received via the HDYO web site should not be relied upon for personal, medical, legal or financial decisions and you should consult an appropriate professional for specific advice tailored to your situation.HDYO's educational material may be used by individuals or organisations for personal and non-commercial uses that correspond with HDYO's Creative Commons license.The name and mark, HDYO and its attendant logos and...Find out more...
Privacy policyKTYPJP74117411 people shared this0 commentsThis privacy policy sets out how HDYO uses and protects any information that you give us when you use this website and through our official Social Media Pages.HDYO is committed to ensuring that your privacy is protected. Should we ask you to provide certain information by which you can be identified when using this website or Social Media pages, then you can be assured that it will only be used in accordance with this privacy statement.What we collectWe may collect the following information:First and Last Name Contact information including email address Date of Birth Demographic information...Find out more...
HDYO DefinitionsKTYPJP40674067 people shared this0 commentsWho HDYO supports and howHDYO provides support to young people impacted by HD around the world. That is our goal and mission, but what does it mean… who is included… and what do we offer?What is the definition of a ‘young person’ to HDYO?The definition of who is considered a ‘young person’ varies worldwide so this segment is here to explain who is seen as a young person by HDYO.On the HDYO website we highlight three different categories of youth: kids, teens and young adults. These are the three categories of young people that we focus our supportive content and opportunities on. We don’t...Find out more...
Forum Terms of UseKTYPJP50175017 people shared this0 commentsHDYO strongly encourages equality and understanding between all members of the forum. Please show respect for people's decisions, experiences and feelings at all times (even when you disagree with their view). Respect each other's rights at all times. Those not showing respect may lose their right to participate on the forum.HDYO Forum Terms & ConditionsTake a moment to review the Terms and Conditions below. Once you start using the HDYO Forum you are deemed to have accepted and agreed to be bound by these Terms and Conditions. HDYO reserves the right to prohibit (ban) you from using this...Find out more...
HDYO Strategic PlanKTYPJP35803580 people shared this0 commentsHuntington’s Disease Youth OrganizationStrategic Plan 2013-2015Planning Task ForceB.J. Viau Task Force Chair HDYO Chairman of the Board Minneapolis, U.S.ACatherine Martin HDYO Vice Chair Glasgow, ScotlandBrynne Stainsby Secretary, HDYO Board Toronto, Canada Matt Ellison Founder and Project Coordinator Coventry, EnglandKey TermsHD = Huntington’s Disease HDA = Huntington’s Disease Associations HDYO = Huntington’s Disease Youth Organization YP = Young People HCPs = Health Care Professionals IntroductionThe Huntington’s Disease Youth Organization (HDYO) is a youth-led...Find out more...
HDYO 2012 Annual ReportKTYPJP644644 people shared this0 comments 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...Find out more...
HDYO 2013 Annual ReportKTYPJP654654 people shared this0 comments 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...Find out more...
HDYO 2014 Annual ReportKTYPJP507507 people shared this0 comments 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...Find out more...
HDYO 2015 Annual ReportEveryone925925 people shared this0 comments 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...Find out more...
HDYO 2016 Annual ReportEveryone324324 people shared this0 comments Dear Supporter,What a year! There is only one place to start for our review of 2016… youth camps. It is undoubtedly the year of the youth camps. Prior to 2016 we had run two continental sized youth camps in our time as a charity, one in Europe in 2013 and another in North America in 2015. This year we ran both a European Camp and a North American HD Youth Camp back-to-back in August. Both were very successful events as we will highlight in the report. These two camps combined is a fantastic achievement and a lot of work, but we have been fortunate enough to find a way to bring another...Find out more...
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