HDYO has more information about HD available for young people, parents and professionals on our site:
Here 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)
Role: Project Overseer & Translator Coordinator
Hello! Firstly, I am pleased you have found HDYO and I hope the content on our site proves to be 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 were very difficult for me.
When I turned 18 I began getting more involved with Huntington's disease and started facing the issue in my life - I wanted to know what I could do to help. As time went on I got more interested in the youth side of things and felt this was the area I could make an impact in. I started studying for a degree in childhood and youth studies and spent a year going to youth events for Huntington's disease in various places around the world, to see what youth support was like on a worldwide scale. I found that support was poor in many places and there was a huge lack of information available for young people. Put simply there was a gap in support for young people affected by Huntington's disease and something needed to be done to try and fill that gap. This is where the idea of HDYO emerged, a place for all young people to access support and educational information. No matter what the support is like for each young person in their area, HDYO is here to provide support and understanding. If you would like support, don't hesitate to reach out at firstname.lastname@example.org
I continue to work hard on improving support for young people in my role with HDYO, as do all those involved with the organisation. I am eternally grateful to all the great people who work on or with HDYO, and I urge you to take a look at our HDYO Translator Team, who are fantastic! Please feel free to contact me directly at email@example.com. I look forward to hearing from you.
Role: Merchandise & International Representatives Coordinator
Hi, and welcome to HDYO. It is with sincere joy and excitement that this website has launched and you have found us! This has been our vision starting all the way back in 2009 when I first met Matt and he talked about the idea. I am involved with HDYO because my family who is affected by Huntington's disease taught me from day one to fight back by getting involved in HD events and activities. My Mother Debbie who passed away in March 2011 from Huntington's disease is my motivation, inspiration and hero which keeps me going every day to try to give back to others. I first started getting involved by holding “Hoopathons” at a local level to raise money and awareness for HD. If you are confused about what a hoopathon is…check out hoopathon.com. I attended the Huntington's Disease World Congress in Vancouver in 2009, where I met Matt, Brynne and many other young people doing great things in their local communities. After continuously talking to Matt I realized that the missing piece within the Huntington's disease community was the support for young people. Since then I have tried to make the best effort as possible to get young people the sufficient support, education and motivation to also fight back against Huntington's disease. We can all make a difference so please join HDYO in the continued, but hopefully not long fight against Huntington's Disease! Contact me at firstname.lastname@example.org THANKS!
Role: Professional Communications & HDYO Research Development
Hi! Welcome to HDYO - I am so honoured and excited to be a member of this Board, and hope that you will find resources and support here! Much like the others, I am involved with HDYO because my family is affected by HD, and my dad always told us that we have two choices…get upset or get involved and do everything we can to help in the fight against HD (although I have to admit, the two aren't always mutually exclusive!). We formed Young People Affected by Huntington Disease (YPAHD - the Canadian HD youth group) in 2008, and serving as the president of this incredible group of people not only helped me connect with other young people affected by some really specific challenges, but it also brought me to the Huntington's Disease World Congress in Vancouver in 2009. I met Matt, BJ and many other motivated young people accomplishing amazing things and we realized the need to establish a support for ALL young people. I am confident that the more we unite in the fight against HD, the more we can accomplish together!
I am a chiropractor who recently completed a post-graduate residency program and completed my thesis studying how people who are affected by HD cope. This research was so rewarding, and it allowed me to feel like I was contributing to the HD community, but it also left me feeling like I could never escape the impact the disease has on my life; I decided I needed to know what my future held. I learned in January 2011 that I had not inherited the gene, and this wonderful news was truly life changing. I was grateful beyond belief, but also overwhelmed by guilt…which thankfully evolved into more motivation than ever to make the world better for all of us affected by HD
I am so thankful for everyone involved in the HD community, and particularly the amazing people involved with HDYO! I hope this site becomes your very own, and please feel free to contact me directly at email@example.com. Welcome, and thanks for getting involved!
Role: Peer Support & Grant Applications
Hello and welcome to HDYO, a website that truly is for young people by young people. Like the other board members, Huntington's disease has had a massive impact on my life but mostly positive!!!! I grew up with my Gran and other members of my family being affected by Huntington's disease but they taught me that if we talked and worked together we could overcome anything. Huntington's disease was never something we hid and we have always been involved in fundraising, awareness raising and sharing our experiences. My family were involved in establishing the Scottish Huntington's Association (SHA) and creating the first family support group so that they could find out more information and meet other families living the Huntington's disease.
As for me I am now caring for my Mum who has been symptomatic with Huntington's disease for 18 years and is the most frustrating, amazing, inspiring and loving person I know, and a true hero. I previously worked as the Specialist Advisor for Parents and Young People with SHA and I am now an elected Board Member of the Association.
My professional background is in youth work and social & community regeneration and it is with these skills and my personal experiences that I am grateful to Matt, BJ and Brynne for allowing me to be part of HDYO and helping them raise the bar for young people across the world living with Huntington's disease.
I welcome you to your website and to the new friends that are always willing to listen, understand and support you. Contact me at firstname.lastname@example.org.
Role: International Representative Support
Hello and welcome to HDYO!
My name's Michelle, I'm 32 years old and live in Australia. My mum was diagnosed with HD when I was 15 years old. When I was growing up I helped my dad care for my mum at home but as things became more difficult she moved into a nursing home, she was 46 years old. I've spent a lot of time with her in the nursing home over the last 10 years and at times it can be tough, especially not having the mother daughter relationship that a lot of my friends have with their mums, but we have some very special times together too. We don't go out for dinner together or shopping…we eat chocolate in her bed! My mum has a great sense of humour and we have some good laughs…as well as lots of tears. I was tested for the HD gene two years ago and I was negative, which means I won't get HD, however my three brothers are all positive for the gene, so HD will always be a part of my life. I did a story for Marie Claire a few years ago which you can read via a forum I set up if you would like to know more about my personal story of testing.
I didn't know anyone else living with this disease when I was growing up (other than my family!), and I used to feel pretty lonely and worried about my mum. So a few years ago I set up an online forum in Australia and I now have heaps of new friends! We talks lots about HD, have held 3 fundraising concerts and have lots of good times together! When I met other younger people who had grown up with HD it changed my whole experience, I was no longer alone. My friends and I started up a webpage in Australia for young people living with HD called Our HD Space because from our experiences we felt that it's really important young people have access to information, support and connections.
So it's absolutely fantastic to now be involved in a worldwide resource for all young people affected by HD. This is a resource for young people by young people, so please feel free to contribute, share and join in! Welcome to HDYO!!