Huntington's Disease Youth Organization - Young adults

Erika highlights the Enroll-HD study: A worldwide research study we can all participate in16 April 2013Hello friends, Many of you may know about an observational trial called ENROLL-HD - for those of you that don't, it is a huge study done in 19 countries (14 different languages) at 240...Find out more...
What do young people need?Researchers want to know what support young people currently lack and would like to have. Want to help?Find out more...
Ask a questionHave a question about HD? Get it answered here by HD experts from around the worldFind out more...
HDYO Receives official support from the Dutch HDA28 March 2013 We are thrilled to announce that the Huntington's Disease Association in the Netherlands has provided their official support for HDYO and its projects.Thank you and we appreciate your...Find out more...

Erika highlights the Enroll-HD study: A worldwide research study we can all participate inEveryone20 days ago11 person shared this0 comments16 April 2013Hello friends, Many of you may know about an observational trial called ENROLL-HD - for those of you that don't, it is a huge study done in 19 countries (14 different languages) at 240 medical centers. The coolest thing about the study: everyone who is at least 18 can participate! Anyone with affiliation to HD has a place in this study. There is no need to get tested if you are still undecided or prefer not to know; your gene status will not be disclosed. The appointments are done annually and you will be providing useful information to researchers so that we can have better...Find out more...

HDYO Receives official support from the Swiss HDAEveryoneabout 1 month ago11 person shared this0 comments16 April 2013 We are thrilled to announce that the Huntington's Disease Association in Switzerland has provided their official support for HDYO and its projects. Their support will help HDYO spread educational information and support to young people in Switzerland who are impacted by HD, which is a really crucial step for us here at HDYO so we're delighted to have the support from the Swiss HDA!Thank you and we appreciate your support.Matt News Update Reporter HDYOFind out more...

HDYO Receives official support from the Belgium HDAEveryoneabout 1 month ago11 person shared this0 comments10 April 2013We are thrilled to announce that the Huntington's Disease Association in Belgium has provided their official support for HDYO and its projects. Their support will help HDYO spread educational information and support to young people in Belgium who are impacted by HD, and hopefully help us to get HDYO online in French!Thank you and we appreciate your support.Matt News Update Reporter HDYOFind out more...

HDYO Receives official support from the Dutch HDAEveryoneabout 1 month ago11 person shared this0 comments28 March 2013 We are thrilled to announce that the Huntington's Disease Association in the Netherlands has provided their official support for HDYO and its projects.Thank you and we appreciate your support.Matt News Update Reporter HDYOFind out more...

HDYO recruits its first staff member!Everyoneabout 1 month ago88 people shared this0 comments26 March 2013 HDYO is delighted to announce that we have received a wonderful grant from the Griffin Foundation that will allow us to create our first ever full-time paid staff position!Matt Ellison, who founded HDYO last year, will be taking on the role of project coordinator. The role involves managing all HDYO projects as well as coordinating the ever increasing HDYO volunteer team which now nears a total of 90 individuals who all do such a fantastic job. Matt will commence his new role on April 1st, 2013 and we all wish him the very best.We see this recruitment as a vital step in HDYO’s...Find out more...

HDYO Receives official support from Swedish HDAEveryoneabout 1 month ago44 people shared this0 comments24 March 2013 We are thrilled to announce that the Huntington’s Disease Association in Sweden has provided their official support for HDYO and its projects for 2013. Their support will help HDYO spread educational information and support to young people in Scandinavia who are impacted by HD, which is a really crucial step for us here at HDYO so we’re delighted to have the support from the Swedish HDA!HDYO is currently supported officially by 15 HDAs worldwide and continues to become a truly collaborative global approach to supporting young people impacted by HD.Thank you and we appreciate...Find out more...

HDYO Receives official support from Huntington's Western AustraliaEveryoneabout 1 month ago33 people shared this0 comments20 March 2013 We are thrilled to announce that the Huntington’s Disease Association in Western Australia has provided their official support for HDYO and its projects for 2013. Their support will help HDYO spread educational information and support to young people in Australia who are impacted by HD. The HDA in WA has recently become one of the few HDAs to have their own youth worker and youth service to support young people in their region. HDYO looks forward to working with HDA WA to continue to improve support for young people impacted by HD.Thank you and we appreciate your support.Matt ...Find out more...

Young Adults Education Day, April 27th – Wisconsin, USAEveryone3 months ago4040 people shared this0 comments21 February 2013On April 27th between 12-4pm at the Country Springs Hotel, Waukesha, Wisconsin, USA. The Huntington’s Disease Youth Organization (HDYO) and Huntington’s Disease Society of America (HDSA) are teaming up to put on an afternoon dedicated to specifically tackle topics that are important to young adults affected by HD. If you are between the ages of 18-40 and are interested in learning more about Huntington’s disease along with meeting other who are affected, then this meeting is for you.Topics to be covered:Young Adult Support around the Country Huntington’s Disease 101 Living...Find out more...

Spaces available: 18-35’s Young Adult Conference in England, 23/24 FebruaryEveryone4 months ago7171 people shared this0 comments12 January 2013The HDA in England & Wales is hosting its 5th annual young adult conference for 18-35 year olds on Feb 23rd and 24th. It is a wonderful opportunity for young people impacted by HD in England and Wales to get together, share experiences, seek advice from professionals and listen to great talks from speakers such as Ed Wild and Charles Sabine. The event costs £45 per person (that includes overnight hotel stay, food and the conference) - an excellent price. To book you can either download the booking form and post it to the HDA, or email/call the HDA and book directly with them....Find out more...

HDYO becomes available in Portuguese, Dutch and ItalianEveryone4 months ago4747 people shared this0 comments10 January 2013 We are delighted to announce that the HDYO website and its content are now available in 3 new languages (Portuguese, Dutch and Italian) thanks to our wonderful translation teams for each language. Their hard work has now made support and educational content available via HDYO to young people impacted by HD in many regions worldwide. Portuguese, Dutch and Italian take the total number of languages HDYO is available in to 6 (English, Spanish and German being the other 3), with more languages set to launch later in 2013. If you are viewing the site for the first time in...Find out more...

1st Youth Conference in Germany – register now!Everyone6 months ago137137 people shared this0 comments22 November 2012Young people (aged 18 – 35) from HD families in Germany and their partners are invited to the 1st Conference especially for young people on April 13th & 14th, 2013 in Stuttgart.The German HD association “Deutsche Huntington-Hilfe e. V.” is presents various German HD specialists talking about HD Basics, Coping with HD, Genetic Testing, Care and involvement in HD research and offering discussion groups for topics like Relationships, Talking to kids about HD, Having Children and Legal situation at work.Joe Guiliano (CHDI) will be there to give the hottest News on HD research...Find out more...

HDYO: Breaking down barriers for young peopleEveryone7 months ago5656 people shared this0 comments3 November 2012In February 2012, the Huntington’s Disease Youth Organization (‘HD-YO’) was founded with the aim of supporting and educating young people impacted by Huntington’s disease (HD) around the world. HDYO was created to fill a massive gap in the HD community with regards to youth support, which was recognised by many young people as a serious issue. It is fair to say that since launching in early 2012 HDYO has been an astounding success, providing a valuable tool to empower young people through knowledge and understanding, and making a real difference for many youth searching for...Find out more...

Are you trying to decide whether to be tested for the HD gene?Everyone7 months ago5555 people shared this0 comments22 October 2012Hi,Just a quick reminder about a possible documentary about Huntington's for UK television. We are hoping to make a television programme about young people with Huntington's in their family, who are trying to decide whether to have a genetic test themselves.If you live in the UK and you are trying to decide whether to have genetic testing or not, would you be happy to share your experiences with me over the phone? All information given is strictly confidential, and please be assured that talking to me does not mean that you commit to being filmed. However, it would be really...Find out more...

The Irish HD Association offers their official support to HDYOEveryone7 months ago5656 people shared this0 comments15 October 2012 We are delighted to add the Irish Huntington’s disease association to our long list of official supporters. The Irish association support what HDYO is doing for young people in the HD community and have expressed their support with an official contribution to HDYO and our projects.Matt, News Update Reporter, HDYOFind out more...

The Danish HD Association extends their official support to HDYOEveryone7 months ago5656 people shared this0 comments10 October 2012 It is with great pleasure that we announce the Danish Huntington’s Association’s official support for HDYO. The HDA in Denmark have provided a wonderful contribution to HDYO and fully support the important task of improving support for young people within the HD community. We look forward to a successful partnership. Matt, News Update Reporter, HDYOFind out more...

Website update (Oct 2012)Everyone8 months ago5858 people shared this0 comments1 October 2012 The HDYO website underwent some upgrades recently in order to add and improve to the website’s ability to connect young people impacted by HD worldwide. There were some improvements to the HDYO forum, which can now accept links in posts as well as paragraph spacing. While the website received a few new design upgrades including the ability to ask a question directly from the HDYO website now (rather than going through email). The same webpage form is now possible in the creative expression section and the feedback + support contact options… making it easier for young people...Find out more...

HDYO confirms youth service partnership with HDAs in both Ireland & Northern IrelandEveryone8 months ago5353 people shared this0 comments23 September 2012 Team HDYO recently went over to Belfast to speak about HDYO at a HD conference in Northern Ireland. Additional to this there was a meeting held between the HDAs in Ireland, Northern Ireland (NI) and HDYO to discuss the creation of a youth service for young people in both regions impacted by HD. Both the HDAs in Ireland and NI are keen to develop a youth service and are working together to achieve this goal. They have both asked for HDYO to get involved and help with the progression of the project and to support young people in Ireland & NI to shape their own youth...Find out more...

HDA in Northern Ireland provides official support for HDYO!Everyone8 months ago5555 people shared this0 comments22 September 2012 We are delighted to announce that the HDA in Northern Ireland has been in contact and provided a financial contribution to HDYO as part of becoming an official supporter of our cause. The HDA in NI become the 11th HDA around the world to officially support HDYO. The support of the HDA in Northern Ireland came as members of Team HDYO went over to Belfast to speak about HDYO at a HD conference in Northern Ireland. There were several young people at the event and all of them were wearing their HDYO t-shirts for the HDYO talk! How awesome is that!Matt, News Update Reporter, HDYOFind out more...

HDYO is now available in SpanishEveryone8 months ago5656 people shared this0 comments13 September 2012 Hola! We are delighted to announce that the HDYO website and its content are now available in Spanish! This means young people in Spain and many regions of South America now have access to appropriate information about HD and have a place to go for support. This is a huge step forwards for HDYO, Spanish is the 3rd language the site is now available in (English and German being the other two). The Spanish HDYO Translator Team did a wonderful job getting the website translated. Thank you to our wonderful translators for their hard work and watch out for more languages in...Find out more...

HDYO celebrates 6 months of success!Everyone9 months ago6767 people shared this0 comments7 August 2012 HDYO is officially 6 months old!!!! Check out these stats for our first 6 months:125,000+ website views (with the last month being our highest) HDYO's educational sections have been shared through our official sharing system an incredible 1,100+ times!!! (WOW) 275 accounts created enabling access to the forum 10 HD Associations worldwide officially supporting HDYO, providing us with financial support too The website is available in 2 languages, with 15+ other languages being translated behind the scenes as we speak! Team HDYO consists of almost 70 (SEVENTY) young volunteers...Find out more...

HDYO is now available in GermanEveryone10 months ago120120 people shared this0 comments28 July 2012 After many hours, days, weeks and months of hard work from our HDYO German Translator Team, we are thrilled to announce that the HDYO website is now available in German! It is the first language (excluding English) to be available on the website but our team of almost 70 individuals are working hard behind the scenes to convert HDYO into more than 15 languages! Thank you to our wonderful translators for their hard work and watch out for more languages in the coming months.Matt, News Update Reporter, HDYOFind out more...

HDYO: Looking for experiences to help shape our bereavement & loss sectionEveryone10 months ago9090 people shared this0 comments19 July 2012Hi Everybody,HDYO is creating a brand new section to cover the topic of loss and bereavement. The section will focus on helping and supporting young people to cope with the loss of someone to HD or anything else.We are looking for young people impacted by HD who have gone through either loss or bereavement to share their experiences with HDYO so that we can learn from what you went through and produce the most accurate and appropriate support & information for young people who may currently be experiencing such situations.Any young person who feels they would like to share their...Find out more...

HDYO: Looking for experiences to help shape our emotional wellbeing sectionEveryone10 months ago7979 people shared this0 comments19 July 2012Hi Everybody,HDYO is creating a brand new section to cover the topic of emotional wellbeing. The section will focus on helping and supporting young people impacted by HD who may be experiencing such things as depression, anxiety, self-harm, eating disorders or suicidal thoughts.We are looking for young people impacted by HD who have either gone through or are going through depression, anxiety, self-harm, eating disorders or suicidal thoughts to share their experiences with HDYO so that we can produce affective and appropriate support & information for young people who may be...Find out more...

HDYO’s redesigning our fundraising section: we want your ideas!Everyone10 months ago139139 people shared this0 comments19 July 2012Hi there,If you’ve been on the HDYO website before you may have come across a rather less colourful area of the site: the fundraising section. We had plans for the fundraising section but due to some design delays leading up to launch we were never able to get them implemented. So now we are looking to completely redesign the fundraising section and we are looking for a team of young volunteers to help with the project by giving their ideas and opinions on what the fundraising section should look like. Involvement in the project will entail an initial Skype call with some...Find out more...

HDYO Receives official support from the Chilean HDAEveryone10 months ago104104 people shared this0 comments12 July 2012We are thrilled to announce that the Huntington’s Disease Association in Chile has provided their official support for HDYO and its projects. Their support will help HDYO spread educational information and support to young people in South America who are impacted by HD, which is a really crucial step for us here at HDYO so we’re delighted to have the support from the Chilean HDA!Thank you and we appreciate your support.Matt, News Update Reporter, HDYOFind out more...

Can You Help with Research for UK HD Documentary?Everyone11 months ago8686 people shared this0 comments2 July 2012Hi,You may remember me from a post back in May - I'm a television director researching a possible documentary about Huntington's. I’d like to make a television programme about young people who have a parent diagnosed with Huntington's, and who are trying to decide whether to have genetic testing themselves.We've recently had some good news - Channel 4 have given us funding for our research. This is a strong commitment, and means it is now likely the film will be shown on Channel 4. It is also now being considered for an hour slot, so there is real potential here to make a film...Find out more...

UK HD Documentary project needing participantsEveryone12 months ago9898 people shared this0 comments25 May 2012HDYO has received information regarding research for an exciting new documentary project being worked on in the UK by Jo Bartlett and her production company! They are looking for people to get in touch who may feel they can provide experience for the research on the project. Please find information on the project below in a message from Jo:Hi,I'm a Producer/Director working with the television production company called What Larks!. I'm currently researching a possible documentary about Huntington's.I would like to look at the implications of genetic testing for conditions like...Find out more...

HDYO Interview Project: Parents and children from England wantedEveryone12 months ago9494 people shared this0 comments24 May 2012HDYO is planning to do a series of interviews with parents and their children on the topic of 'talking to kids about HD'. We intend to interview both parent and child at the same time and hear firstly how the parent initially discussed HD with the child (what approach they used) and then go on to explore things such as what both parent and child thought of that discussion, how the parent felt before and after the chat, how the child felt, have there been more discussions since that first chat, what have the implications been since the discussion and whether there is anything...Find out more...

HDYO's Online Store Opens!Everyoneabout 1 year ago103103 people shared this0 comments17 April 2012 It is with great pleasure that I announce the opening of HDYO's online store! This new area of the website will contain all the merchandise HDYO creates as we progress as an organization. All profits made from any items in the HDYO store will go towards funds for more projects to help improve support for young people impacted by HD around the world.The store is easily accessible from any page on the website. Just click on the gigantic button labelled 'Store' (oddly enough), and that will take you straight to where you want to be! The first item available in the HDYO store is...Find out more...

Profiles and personal messaging added to the HDYO websiteEveryoneabout 1 year ago336336 people shared this0 comments6 April 2012 The HDYO website underwent some subtle upgrades this week in order to add and improve to the website's ability to connect young people impacted by HD worldwide. Along with slight improvements to the forum, there were two new additions to the site in the form of profiles and personal messaging.People who have accounts on HDYO can now view each other's profiles and find out a bit more about one another. These can be accessed when on the forum by simply clicking on another member's name. As a result of the profiles being launched, two new optional fields have been added to...Find out more...

Official support for HDYO arrives from GermanyEveryoneabout 1 year ago225225 people shared this0 comments27 March 2012 HDYO received the wonderful news this week that Deutsche Huntington-Hilfe, the German HD Association, has decided to provide their official support for HDYO. Their official support means HDYO now has 8 HD Associations supporting our cause since launching in February 2012. Duetsche Huntington-Hilfe has also provided a contribution to HDYO's financial budget for 2012 - which will allow HDYO to continue providing educational information and support to young people impacted by HD worldwide.The HDYO website and content will be available in German in the next few months after some...Find out more...

Roma and Milano both confirm their official support for HDYOEveryoneabout 1 year ago108108 people shared this0 comments25 March 2012 HDYO is thrilled to announce that it has received official support from two Italian HD Associations (Roma and Milano) in the space of a week. Their official support means HDYO has received the support of no less than 7 HD Associations since launching in February 2012. Both Milano and Roma have also provided a contribution to HDYO's financial budget for 2012 - which will allow HDYO to continue providing educational information and support to young people impacted by HD worldwide.HDYO thanks Roma and Milano for their huge show of support and faith in our plans for the future. We...Find out more...

The HDA confirms their official support for HDYOEveryoneabout 1 year ago9393 people shared this0 comments20 March 2012 Great news for HDYO this week as the HDA in England & Wales signed the HDYO business plan and confirmed their official support for the organization. The HDA have long been admirers of HDYO and helped set up HDYO in the first place, so it was fantastic for both sides to be able to make the partnership official. The HDA has provided just over 25% of HDYO's planned budget for 2012, the biggest contribution yet to the HDYO cause!Cath Stanley, Chief Executive of the HDA, said "HDYO is a great initiative and essential resource created by young people for young people. It will form...Find out more...

Huntingtons Victoria joins the list of official supporters for HDYOEveryoneabout 1 year ago8282 people shared this0 comments8 March 2012 HDYO is thrilled to announce that Huntingtons Victoria, one of the Australian States HD Associations, has confirmed their official support for HDYO and our projects for 2012. Huntingtons Victoria becomes the 4th HD Association to provide their support to HDYO since we launched at the beginning of February. Huntingtons Victoria has provided a substantial contribution to HDYO's planned budget for 2012. Tammy Gardner, General Manager at Huntingtons Victoria had this to say about supporting HDYO:'I see this as an initial exciting step towards a productive working relationship...Find out more...

The HSC confirms their official support for HDYOEveryoneover 1 year ago9393 people shared this0 comments9 February 2012 HDYO is delighted to announce that the Huntington's Society of Canada (HSC) has confirmed their official support for HDYO and our projects for 2012. The HSC become the second HD Association to give their support to HDYO, after the HDSA confirmed their support for the organization last week. The HSC has provided 25% of HDYO's planned budget for 2012!We are hugely appreciative of the HSC's support and belief in HDYO's mission.The HSC and HDYO will work towards improving support for young people impacted by HD in Canada.Matt, News Update Reporter, HDYOFind out more...

The HDSA confirms their official support for HDYOEveryoneover 1 year ago9191 people shared this0 comments7 February 2012 As HDYO launched it received the fantastic news that the Huntington's Disease Society of America (HDSA) has signed the HDYO business plan and confirmed their official support for the organization. The HDSA have been providing 'unofficial support' for several months with regards to helping HDYO with such things as creating a business plan, so having HDSA sign that same business plan a few months later and confirm their official support for our cause was phenomenal news. The HDSA has provided 25% of HDYO's planned budget for 2012!HDSA is the first HD Association to confirm...Find out more...