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Logo smallHDYO NewsKTYPJP131131 people shared this0 comments

Welcome to the news area of the HDYO site! Here you will find the latest HD news covered by our wonderful News Team, a group of young volunteers who give their time and energy to ensure the latest news in HD is understandable for young people and families in the HD community. We focus on a wide range of news topics such as research, fundraising, advocacy, personal experiences, community development and, of course, support services and event for young people impacted by HD. If you have a news story you think we should be covering let us know by contacting newsteam@hdyo.org

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Research Fundraising Personal stories Youth Support Events HDYO Advocacy HD Community

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Hdyo 5 yearsHDYO Celebrates 5 Years!Everyone1010 people shared this0 comments

Earlier this month, HDYO turned 5 years old. But what have we done in that time? The answer, fortunately, is lots!

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Logo smallHDYO Recruiting new staff personEveryone1212 people shared this0 comments

HDYO is recruiting for a new staff role to expand our team.

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Hotseat filipaHDYO Hot-Seat with FilipaEveryone1313 people shared this0 comments

We decided to interview Filipa Julio, from Portugal, who is one of our most reliable translators and reviewers in Portuguese, and is herself very involved in the HD community despite no family connection.

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Art camp na 2017 1North American HD Youth Camp 2017 Applications Now Open!Everyone2323 people shared this0 comments

After the great success of the North American camp last year, we are very happy to announce the opening of applications for the camp again this year!

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News selenaSelena's North American Camp 2016 JourneyEveryone6161 people shared this0 comments

After spending four days with so many inspiring young people I have decided to write for an audience that isn’t my notebook stored away in my desk drawer. I have shared my experience at the 2016 North American Huntington’s Disease Youth Camp with everyone I have had the chance to, but I feel I haven’t done the camp justice with my spoken words.

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News leah and annaLeah and Anna's North American Camp 2016 ExperienceEveryone6161 people shared this0 comments

The Huntington’s Disease Youth Organization is a group that has successfully created a safe place for young people to learn and grow together through their connections with HD. The camp allows youth from across the country to come together and create life-long bonds, leaving with the knowledge that they have an endless amount of support and love whenever they need it. The four day experience provides a place where the youth get to live care-free, even when disease has taken over their lives and forced them to mature faster than other people their age. It’s a time of peace, empathy, joy, and freedom, as caregivers, the at-risk, and the tested are able to take a break from their heavy burdens. Most importantly, campers are gifted with access to time for self-care and relationship building-a type of therapy that helps them grow and provides the tools that they need in order to return to the harsh reality that lives back home.

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News ashleyAshley's Euro Camp ExperienceEveryone7070 people shared this0 comments

To start I would like to Matt and Cat for all of the organization and effort that was put into pulling off such an amazing week. I’d also like to express my most heartfelt appreciation to Michelle, who is my support worker in Northern Ireland and to Grant, who was my team leader and my temporary support worker. You and all your colleagues do such amazing work and deserve utmost gratitude for all that you do. I’d also like to thank my girls Chloe, Roisin and Amy as I couldn’t have asked for more fun-loving and wonderful people to share this experience with!

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News kateA new member of the HD family!Everyone6464 people shared this0 comments

Anyone who knowingly faces the possibility of Huntington’s disease is far too familiar with one hauntingly uncertain fraction: 50/50. There’s a 50 percent our lives will flip upside down. There’s a 50 percent chance they won’t. There’s zero assurance and a constant teeter-tottering between levels of hope and doubt.

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Art camp oz nz 2017 1Australia and New Zealand HD Youth Camp 2017!Everyone6464 people shared this0 comments

We are absolutely delighted to announce that in January 2017 we will be hosting a HD Youth Camp for young people in Australia and New Zealand! This event will be completely free for young people to attend. Applications are now open…

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Logo smallLiving at risk of HD - Research study for young peopleEveryone6464 people shared this0 comments

This is an easy study for young people to get involved in a research study that will help better understand what young people in HD families need in terms of support. To learn more about the study, read below!

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Logo smallSurvey on how young adults affected by or at risk for Huntington’s disease are thinking about future optionsEveryone203203 people shared this0 comments

This is a notification on a survey young people impacted by HD globally can participate in. It’s focused on young people’s knowledge of the options around having children. For more details click the link to read the whole article.

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News judit 1HDYO Hot Seat – JuditEveryone193193 people shared this0 comments

Judit from Spain is the young person in the HDYO Hot Seat this month!

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News euro camp 2016European HD Youth Camp 2016 Applications OpenEveryone9696 people shared this0 comments

We are delighted to announce that a European HD Youth Camp will be taking place in England this August!

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News na camp 2016North American HD Youth Camp Applications Now Open!Everyone9696 people shared this0 comments

After the great success of the North American camp last year, we are very happy to announce the opening of applications for the camp again this year!

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News lucres 1HDYO Hot Seat with LucresEveryone8686 people shared this0 comments

In the Hot Seat this month is HDYO Dutch translation coordinator, Lucres!

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Art hdyo landHDYO Land Launches!Everyone9292 people shared this0 comments

HDYO’s brand new children’s educational project, HDYO Land, launches today! Filling a gap in resources for children to learn about HD in an appropriate way.

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News twitchTwitch Documentary availableEveryone7474 people shared this0 comments

Twitch is a powerful documentary created by Kristen, a young person in a HD family, which explores her experiences of growing up in a family with HD and focuses on her predictive testing process and results.

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News bj book 1BJ reviews new HD book recently launched – Rules for 50/50 chancesEveryone194194 people shared this0 comments

RULES FOR 50/50 CHANCES is a page turning novel written by Kate McGovern. RULES takes you through a one year journey of Rose Levenson, a seventeen year old living at risk for Huntington’s disease while also caring for her mother and trying to live a normal life with friends, ballet and teenage love.

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News wa 1Western Australia’s HD Youth ServiceEveryone200200 people shared this0 comments

We were lucky enough to speak with Monica, who is the Youth Liaison Officer for Huntington’s Western Australia to find out more about the organisation’s youth service for young people who have been impacted by or are at risk of Huntington’s Disease!

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Logo small3 Reasons why Enroll-HD is the most powerful longitudinal study everEveryone7979 people shared this0 comments

Chris explains what makes Enroll-HD is the best HD study ever

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News camp 1My Experience at the HD Youth Camp!KTYPJP125125 people shared this0 comments

If I could sum up this North American HD Camp in a few words they would be: inspiring, helpful and life changing. I did not think that I would leave camp with tears of both happiness and sadness. I most definitely did not think that I would form such a close bond with all of the campers and staff. I honestly added family members, not friends to my circle, and that is an amazing feeling in itself.

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News johan 1HDYO Hot-Seat with JohanKTYPJP142142 people shared this0 comments

This month we find HDYO volunteer, Johan, in the Hot Seat, taking questions from Erlend, from the HDYO News Team.

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News marcia 1HDYO Hot Seat with MaricaKTYPJP353353 people shared this0 comments

Join us as we catch up with Marica, one of HDYO’s translators, in the HDYO Hot Seat! Marica practically got HDYO into Italian by herself with some amazing volunteer effort. We’re proud to have her on our team!

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News mikayla 1Mikayla’s story – David vs GoliathKTYPJP567567 people shared this0 comments

Small but mighty—it’s a cliché used far too often in society, and when used, it rarely describes its object of depiction with accuracy. In some circumstances, however, the David-Meets-Goliath motto meets its analogical match. In this circumstance, the match is Mikayla Hounchell, the world’s twenty-first century David. Her Goliath? Huntington’s disease.

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News seth 1Boston’s busy beeKTYPJP474474 people shared this0 comments

Let us introduce you to Seth Rotberg! This American guy is one of many young adults around the globe who is coping with HD. The 24-year old lives in Natick, Massachusetts. Natick is around a forty-minute drive away from the state’s capital Boston, where he will move to this September. Seth was formerly the President for the Massachusetts chapter of the Huntington’s Disease Society of America (HDSA) and works for Boston Scholar Athletes, a non-profit organisation.

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News mid 2015 1Mid-2015 Update from HDYOKTYPJP154154 people shared this0 comments

Well, we are just over a half way through 2015 now and I suppose the usual comment to make is how quickly the year has gone by so far! Let’s have a look at what we’ve been up to and what’s coming up on our workload as we head towards 2016.

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News light 1Lighting It Up for HD #LightItUp4HDKTYPJP130130 people shared this0 comments

May 4th was a monumental day for the Canadian HD community thanks to Jamie Walters, a volunteer with the Huntington Society of Canada.

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News ally 1HDYO Hot Seat – AllyKTYPJP309309 people shared this0 comments

This month in the HDYO Hot Seat we find Ally, a forum moderator at HDYO!

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News eha 1EHA conference 2015 – Warsaw, PolandKTYPJP367367 people shared this0 comments

We’re pleased to announce that there will be a family-focused conference in Europe this year, in the form of the EHA conference!

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News destiny enroll 1Destiny’s Enroll-HD visitKTYPJP576576 people shared this0 comments

A trip to DC was an adventure indeed. My family and I had the opportunity to participate in another study for Huntington’s Disease called ENROLL. The study takes place nationwide and tests those at risks for Huntington’s as well as some care-takers. My family and I are always willing to get involved in any way that we can so this was the perfect opportunity for us all to get involved together.

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News clara 1HDYO Hot seat with ClaraKTYPJP380380 people shared this0 comments

Find out what happened when we interviewed HDYO German translator Clara for the HDYO seat!

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News clinical trials 1Keep the Doctor Away; 5 Clinical Trials Bringing HD Therapies to Us Today KTYPJP396396 people shared this0 comments

For those of us who aren’t as in touch with the research as we would like to be, the information that this year sees the commencement of 5 clinical trials for HD treatments may come as something of a surprise. Even to regular meeting-goers, the announcements at the latest EHDN conference in Barcelona seemed to signal a significant change of pace; promising therapies were no longer just on the horizon.

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News megan 1Megan Osowski: A Warrior of Her Own KindKTYPJP205205 people shared this0 comments

If there is any statement to describe young Megan Osowski, it is that she is simply a warrior. Though she has been dealt cards of an unfortunate deck in life, she has risen to overcome. Growing up, Megan endured the struggles of having a parent with HD, a battle few others her age must face. As a result of her father’s illness, Megan earned her strength at a very young age. Her independent personality has allowed her to patch her scars and move forward, even when her heart begs for her to do otherwise. Most would fall learning to walk in Megan’s shoes, but the brave young girl never seems falter in her steps. ‘[I have] a drive inside me that no one else has,’ she states.

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News chandler 1Chandler's Mid-Atlantic HD youth service updateKTYPJP131131 people shared this0 comments

I’ve been with HDYO just over a year so it seems fitting to take some time and reflect back. One thing I can say with certainty at the end of year one is the HD community is the strongest, most passionate, most welcoming and fun communities I have ever been privileged enough to be a part of.

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News rachel and gracee 1Gracee’s Spectacular JourneyKTYPJP420420 people shared this0 comments

On December 29th, 1998, Gracee Faith Young was brought into this world. She was a beautiful and happy baby who brought extraordinary amounts of joy into the lives of the people around her. Her teachers praised her self-confidence and marvelous social skills since she was a little girl. She was delightful and full of fun.

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News kristen 1HDYO Hot seat with Kristen PowersKTYPJP134134 people shared this0 comments

Find out what happened when we interviewed HDYO board member Kristen Powers for the HDYO seat!

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News german conference 13rd Annual German Young Adult ConferenceKTYPJP129129 people shared this0 comments

Here at the HDYO News Team, we were excited to speak with Michaela, Lisa and Christian from Germany to find out more about their event, the 3rd Annual German Youth Conference!

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News bj 1HDYO Hot Seat with HDYO Chair BJ ViauKTYPJP129129 people shared this0 comments

Find out what happened when we sat down with HDYO Chair BJ Viau to interview him for the HDYO Hot Seat!

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News volunteers 5Matt’s Blog - Happy 3rd Birthday HDYO: A special thank you to the volunteersKTYPJP384384 people shared this0 comments

We quietly celebrated HDYO’s 3rd Birthday on Feb 7th this year and it’s safe to say HDYO has been successful and, most importantly, beneficial for young people impacted by HD worldwide. We’ve come a long way in a short amount of time. But I want to bring some attention on to the volunteers who make up what we call Team HDYO, because in all seriousness what HDYO does would not be possible without the work of these wonderful volunteers.

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News north american 1Matt’s Blog - The North American HD Youth CampKTYPJP346346 people shared this0 comments

You may have seen that on February 3rd we announced a very exciting new project: the North American HD Youth Camp! This is a brand new event available for young people who are impacted by HD aged 15-23 years from the US and Canada. I thought I would take the opportunity to blog about this wonderful new event especially for young people that will be taking place from August 24th-27th in Maryland, US.

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News destiny 1Testing for others: My experience of participating in Kids-HD studyKTYPJP135135 people shared this0 comments

When thinking about taking a whole day to put your brain to the test and have others evaluate you… it’s not the most comforting thought, but neither is being at risk for Huntington’s Disease.

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North american camp groupNorth American HD Youth CampKTYPJP168168 people shared this0 comments

HDYO and HDSA are excited to host the first ever North American HD Youth Camp. The goal of camp is to offer young people the chance to meet other young people impacted by HD, to learn about HD through educational workshops, to share experiences through share sessions and to have plenty of fun participating in the many on-site activities, such as swimming, ropes courses, paddle boarding, archery and much more. We hope young people attending camp will benefit by feeling less isolated, more supported, as well coming away from camp with an improved understanding of HD and strong peer connections with other young people in similar situations. There will be an experienced HD team of professionals and volunteers on-site to support young people at all times.

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News gavin 1My First HDSA ConventionKTYPJP136136 people shared this0 comments

The shimmer of light aqua blue light shining from light sticks. One by one until hundreds of friends in that room were holding a light stick that shined across the giant room filled with the best friends that I would ever meet….the best day of my life.

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News portugal 4HDYO’s Awareness Tour in PortugalKTYPJP547547 people shared this0 comments

In October I was very fortunate to be invited by the Portuguese HD Association to speak at two events: one in Lisbon and the other in Porto – two of Portugal’s biggest cities. The goal: to spread awareness of HDYO amongst families in Portugal!

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News hallie 1Learning to Live: Matt Ellison's JourneyKTYPJP123123 people shared this0 comments

Huntington’s disease is an illness which alters the lives of each and every person with which it comes into contact. Some become defeated, some become strong. Matthew Ellison has chosen to gain strength. Though pain seemed to be inevitable as a result of his childhood, Ellison seemingly defied all odds. As founder of the Huntington’s Disease Youth Organization, Matt has effectively used his past as a means to improve the futures of youth around the world. Using his trials as driving forces, Matt overcame a childhood which lacked support in order to provide such aid to youth like himself around the world. Ellison’s commitment and dedication has allowed for him to create a positive outlet for HD youth, and his story has allowed for a beautiful journey.

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News anchorman2An Introduction to HDYO’s News TeamKTYPJP323323 people shared this0 comments

This message is to let our account holders know that over the next year you will begin receiving regular updates from HDYO regarding all things HD with the creation of the HDYO News Team!

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Logo smallUK research: Talking to children about inherited genetic conditionsKTYPJP147147 people shared this0 commentsBelow is a research project at Kings College, London, which HDYO is supporting. If you think you and your family would like to take part please contact Emma on the email below.Talking to children about a genetic condition – a new and exciting opportunityA new and innovatory way of supporting parents to talk with their children about the genetic condition in their family has been developed. Researchers worked with parents, children and young people along with clinicians worked to develop the method and they now wish to test whether families do think it is useful.The method is called a...Find out more...
Logo smallHDYO Launches in Polish – our 10th language!KTYPJP278278 people shared this0 commentsWe are delighted to announce that HDYO’s website recently launched in Polish thanks to the huge voluntary effort from our Polish translation team. HDYO’s website is now available in 10 languages making us slightly more multi-lingual than we were previously! But more importantly, reaching many more families and young people impacted by HD as a result.We are committed to making HDYO as globally accessible as we can and will continue to work hard on all languages to ensure that is the case.Matt Ellison Project Coordinator HDYOFind out more...
Logo smallSwedish Youth ConferenceKTYPJP167167 people shared this0 comments29-30 March, 2014The conference is open for you who are 18-35 years and grew up in a family affected by Huntington´s disease. The conference is also open for your partner. This is an opportunity to meet others who have similar experiences as you. It is also an opportunity to discuss topics that concerns you and get an update about research around the world.Download more information and a booking formFind out more...
Logo smallHD STARKTYPJP191191 people shared this0 commentsInspired by the ‘Huntingtin in space project’, HD STAR is one of the SHA’s 25th anniversary awareness raising projects. Would you like to help awareness of HD reach the stars?On the 17th May SHA will send 500 messages of hope, inspiration and remembrance into orbit in a weather balloon and when it bursts at 25 miles above the earth they will be scattered for hundreds and thousands of miles. Each message will have return information on it so that we can discover just how far our awareness raising reaches!You can also get involved by joining our search and recovery teams, whose job will be to...Find out more...
Logo smallHDYO Celebrates its 2nd Birthday!KTYPJP172172 people shared this0 commentsFebruary 7th saw HDYO turn 2 years old! It has been a wonderful 2 years of hard work and progress to improve the education and support young people impacted by HD around the world receive. In that time HDYO has grown to have 2 full-time staff, a volunteer team of around 130 (mostly young) people who have made a huge contribution to HDYO in a variety of roles. Our content has become highly-regarded and is now available in 9 languages thanks to our volunteer translator team. We’ve done projects with young people around the globe and continue to expand our reach to more areas. The website...Find out more...
Logo small18-35’s Young Adult Conference in England, 15-16 March, 2014KTYPJP385385 people shared this0 comments15-16 March 2014The HDA in England & Wales is hosting its 6th annual young adult conference for 18-35 year olds on March 15th to 16th. 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, Hugh Rickards and personal stories from young adults themselves.The event costs £45 per person (that includes overnight hotel stay, food and the conference) - an excellent price. To book you can either go to the HDA website and download the booking form...Find out more...
Logo smallHD Generations Project Survey – your experiences needed!KTYPJP426426 people shared this0 comments21 November 2013In September 2013 SHAYP Life (Scottish Huntington’s Association Youth Project) was awarded £45,000 by the Young Start Fund to spearhead a national project called ‘HD Generations’. Working in partnership with HDYO, the two year project will focus on developing a Youth Roadmap workbook resource that young people can use to explore issues related to Huntington’s Disease (HD).By clicking on this survey link and completing the quick survey you will be helping to shape and create the finished resource.ThanksDavid Drain Specialist Youth Advisor Scottish Huntington’s AssociationFind out more...
Logo small2nd Youth Conference in Germany – register now!KTYPJP720720 people shared this0 comments20 November 2013Young people (aged 18 – 35) from HD families in Germany and their partners are invited to the 2nd Conference especially for young people. It will take place from April 25th - 27th, 2014 in Duderstadt (near Goettingen). The German HD association “Deutsche Huntington-Hilfe e. V.” presents various German HD specialists talking about HD Basics, Care, Mental Health, Strategies from a legal perspective, HD Research process and participation. Feel free to share your experiences and ask your questions during the discussion groups on topics like At Risk – what to do? General...Find out more...
Logo smallHDYO recruiting a youth worker in the USKTYPJP183183 people shared this0 comments18 October 2013 We are delighted to announce that HDYO is currently recruiting for a brand-new, full-time youth worker in the Mid-Atlantic region of the US. Funding has been secured to create a 3-year project which will see the first ever HD youth worker in the US, helping young people and families in the Mid-Atlantic region (Washington DC, Baltimore and North Virginia). This is a hugely significant step for supporting young people and we are very excited about the prospects. This role is the result of collaboration between HDYO, the Griffin Foundation and HDSA, all working together to...Find out more...
Logo smallHDYO is now available in FrenchKTYPJP190190 people shared this0 comments1 October 2013Bonjour! We are delighted to announce that the HDYO website and its content are now available in French! This means young people in France and many regions around the world now have access to appropriate information about HD and have a place to go for support. This is a huge step forwards for HDYO, French becomes the 8th language HDYO’s website is available in!The credit is with the French HDYO Translator Team who 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 the coming...Find out more...
Logo smallUK research: talking to children about inherited genetic conditionsKTYPJP204204 people shared this0 comments4 September 2013Below is a research project at Kings College, London, which HDYO is supporting. If you think you and your family would like to take part please contact Emma on the email below. The research project “Talking to Children about inherited genetic conditions” launched on 1st September 2013. The project works collaboratively with families (parents, children and young people) with an inherited genetic condition to develop an intervention that will support families to communicate more effectively with their children (<18 years) about the genetic condition affecting their family and...Find out more...
Logo smallHDYO launches in Norwegian and Italian!KTYPJP178178 people shared this0 comments3 September 2013It is with fantastic pleasure that we announce HDYO’s website is now available in both Norwegian and Italian! This would not have been possible without the brilliant work and effort of the volunteers that give their time to HDYO. For them, we are truly grateful!Italian and Norwegian become the 6th and 7th languages available on the site, increasing the multi-lingual nature of our site even further and reach more young people and families impacted by HD in the process.If you are viewing the site for the first time in Italian or Norwegian, welcome! We hope you enjoy the site....Find out more...
News youth campEuropean HD Youth Camp 2013 – A big successKTYPJP18591859 people shared this0 comments17 July 2013 During the 7th - 14th July, 2013, HDYO co-organised the European HD Youth Camp with several European HD Associations. The camp, which attracted over 40 young people from 8 different EU countries, was filled with fun activities, educational and support sessions. The camp was held at a center for families with rare diseases in Burgos, Spain. Many of the young people who attended camp experience isolation throughout the year in their dealings with HD. But camp provides an opportunity to be around young people in similar situations, removing the feelings of isolation, and hopefully...Find out more...
Logo smallHDYO wants your feedback!KTYPJP197197 people shared this0 comments17 June 2013We've created a feedback survey especially for our users/fans. We want to know what you think of HDYO as an organisation and also what you feel HDYO should be doing for young people impacted by HD both in your local region and globally. Please take the (short) time to fill out this anonymous survey and provide your feedback. It would be very much appreciated and it is so important we hear each individual's thoughts and suggestions. You do NOT have to be a young person to provide feedback – we want to hear from everybody within the HD community and those that use our service. Use...Find out more...
Logo smallMichelle's Poetry 4 HD Project – your HD poems wanted!KTYPJP723723 people shared this0 comments12 June 2013Michelle from Canada is creating a poetry book for HD and is looking to fill the book with poems from different people from around the world who are impacted by HD. See her message below and if you feel like getting involved, you can send your poem to the email address as the bottom!“It is undeniable that poetry is a most powerful and profound medium of human expression. The psychological content found in poems goes beyond which is ordinarily found in conventional, scientific inquiry. Writing poetry is an invaluable means of self-expression, permitting the writer a voice for...Find out more...
News burgosHDYO will put on its first ever European Summer camp!KTYPJP182182 people shared this0 comments22 May 2013 We are delighted to announce that HDYO has been successful with receiving funding from the EU to put on its first ever HDYO camp. The camp will be held in Burgos, Spain and will be available for young people between the ages of 16-28 from any European country where the HD Association supports the project. These countries include:Spain Germany Ireland Northern Ireland Scotland Norway Sweden Poland Belgium There are places for 40-45 young people and camp will take place during the week of 7th-14th July. Places for camp are being decided by the local HD Associations in each country...Find out more...
News berry campPeter Earl Association to hold kids camp in NSW, AustraliaKTYPJP207207 people shared this0 comments21 May 2013 We’ve received word from the Peter Earl Association that they will be running a kids camp at Berry sport and rec in New South Wales, Australia from the 25th-27th September. The camp is for kids between the ages of 10-14 and will provide an opportunity for kids to get away from HD for a few days. All costs are covered. For more details see the Peter Earl Association's websiteMatt News Update Reporter HDYOFind out more...
News dutch translator team nov 2012Can you help? We’re recruiting more translators and volunteersKTYPJP12651265 people shared this0 comments13 May 2013 At HDYO we are keen to ensure that our content is available in as many languages as possible and are always looking for new volunteer translators to join our growing translation team and help with this project.We are also looking for volunteers to help create subtitle translation documents for the translators to translate. These documents are important to allow HDYO to show its videos with subtitles in all languages.If you are interested in helping out please contact feedback@hdyo.org and state your interest, we will get back to you shortly afterwards to discuss the roles in...Find out more...
News erikaErika highlights the Enroll-HD study: A worldwide research study we can all participate inKTYPJP868868 people 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...
News logo swissHDYO Receives official support from the Swiss HDAKTYPJP339339 people 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...
Logo smallHDYO Receives official support from the Belgium HDAKTYPJP233233 people 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...
News logo netherlandsHDYO Receives official support from the Dutch HDAKTYPJP261261 people 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...
Logo griffinHDYO recruits its first staff member!KTYPJP207207 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...
Logo swedenHDYO Receives official support from Swedish HDAKTYPJP255255 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...
Logo western australiaHDYO Receives official support from Huntington's Western AustraliaKTYPJP190190 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...
Logo hdsaYoung Adults Education Day, April 27th – Wisconsin, USAKTYPJP15611561 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...
Logo smallSpaces available: 18-35’s Young Adult Conference in England, 23/24 FebruaryKTYPJP14231423 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...
News dutch translator teamHDYO becomes available in Portuguese, Dutch and ItalianKTYPJP271271 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...
Logo small1st Youth Conference in Germany – register now!KTYPJP22652265 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...
Logo smallHDYO: Breaking down barriers for young peopleKTYPJP264264 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...
Logo smallAre you trying to decide whether to be tested for the HD gene?KTYPJP264264 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...
News logo irelandThe Irish HD Association offers their official support to HDYOKTYPJP280280 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...
News logo denmarkThe Danish HD Association extends their official support to HDYOKTYPJP275275 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...
News website update oct 2012Website update (Oct 2012)KTYPJP269269 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...
News hda partnershipsHDYO confirms youth service partnership with HDAs in both Ireland & Northern IrelandKTYPJP264264 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...
News ni logoHDA in Northern Ireland provides official support for HDYO!KTYPJP275275 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...
News spanish flagHDYO is now available in SpanishKTYPJP262262 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...
Art hdyo bands handsHDYO celebrates 6 months of success!KTYPJP281281 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...
Art german flagHDYO is now available in GermanKTYPJP15401540 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...
Logo smallHDYO: Looking for experiences to help shape our bereavement & loss sectionKTYPJP316316 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...
Logo smallHDYO: Looking for experiences to help shape our emotional wellbeing sectionKTYPJP299299 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...
Logo smallHDYO’s redesigning our fundraising section: we want your ideas!KTYPJP13891389 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...
Logo smallHDYO Receives official support from the Chilean HDAKTYPJP436436 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...
Logo smallCan You Help with Research for UK HD Documentary?KTYPJP297297 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...
Logo smallUK HD Documentary project needing participantsKTYPJP306306 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...
Logo smallHDYO Interview Project: Parents and children from England wantedKTYPJP308308 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...
Wristband4HDYO's Online Store Opens!KTYPJP319319 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...
News personal messagingProfiles and personal messaging added to the HDYO websiteKTYPJP16321632 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...
Logo germanyOfficial support for HDYO arrives from GermanyKTYPJP16111611 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...
Logo rome and milanRoma and Milano both confirm their official support for HDYOKTYPJP328328 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...
Logo hdaThe HDA confirms their official support for HDYOKTYPJP307307 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...
Logo victoriaHuntingtons Victoria joins the list of official supporters for HDYOKTYPJP296296 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...
Logo hscThe HSC confirms their official support for HDYOKTYPJP318318 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...
Logo hdsaThe HDSA confirms their official support for HDYOKTYPJP308308 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...