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Huntington's Disease Youth Organization

HDYO International Representatives

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

www.hdyo.org

Welcome to the home of our fantastic young HDYO International Representatives! The ‘Reps’ are a new resource in our volunteer team as of 2014. They are a team of young people from around the world who are trained to do two things:

That positive engagement can come in various forms such as spreading awareness, contacting local professionals and community members, giving talks about HDYO at local events and working with HDYO to produce local awareness events in that region. The Representatives role creates a new avenue for young people to get involved with HD and in turn, spread awareness, improve knowledge in their region, and show other young people, families and the local community a positive approach to HD.

Our Reps are available to attend events near you!

Want a HDYO rep to attend an event in your region? Simply contact us using the box below and let us know what you would like your local rep to attend and why. We will get back to you as soon as we can!

Alternatively you can check out our list of reps below and contact the rep closest to you geographically. We currently have reps in the following regions: Chile, England, France, Germany, Norway, Ireland, N.Ireland, Poland, South Africa and Spain.

We will be training more reps in more locations as time goes on! If you’re interested in becoming a rep then send a message to reps@hdyo.org

Chile

Maria

Maria, HDYO Rep

I’m Maria from Chile, South América. I’m a Social Worker currently working with community leaders and neighbors in vulnerable places. I enjoy spending time watching movies, music, movies and biking. I have a family impacted by HD. A beautiful, strong family with my Mom and Dad, siblings and nephews, with a history of relatives affected by HD which has made us closer and whom I’m proud of each day.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

As my dad says “I rather occupy myself than stay just on preoccupying” that is way I want to be part of the HDYO team because I firmly believe in HDYO’s project and how they approach to us in a positive and friendly way making a global connection with people impacted by HD around the world, helping us cope with our shared issues, making me feel I am not alone.

I want to spread awareness, especially in my country and South América where Huntington’s is still just an inside family issue. I want to get young people involved and informed about good stuff too.

Contact Maria

England

Wayne

Wayne, HDYO Rep

My name is Wayne, I am 33 years young and I have lived in England all my life. I work as an Engineer for Virgin Atlantic, which keeps my mind busy and active. It also allows me to see the world with cheap flights!

My Mum has had HD for several years now and is in residential care. I tested positive in 2011 for the gene and currently have no symptoms. I have 3 other siblings at risk of HD, but they are much younger than me so have not tested.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

Its early days at the moment but I have a few ideas in terms of what a HDYO rep can do for young people impacted by HD. I feel privileged to help out a fantastic organisation and to help others cope with HD.

I am involved as I have young siblings at risk and knowing how little support is out there has motivated me to get involved and help where I can.

If I can help just one person in some way then I would be very happy, hopefully I can help many, many more. I just want people to be aware of the support available and for them to know they are not alone.

Contact Wayne

France

Emilie

Emilie, HDYO Rep

I was born in Paris where I live. After a MD in psychology, and a few years working within ethnopsychiatry and social care services, I decided to dedicate myself in writing. I am now a novelist and an essayist.

In 2012, I founded a French and Belgium working group, Dingdingdong, Institute for the Co-production of Knowledge about HD, which gather philosophers and artists in order to create some alternative thoughts and path about HD’s dilemmas. www.dingdingdong.org

I consider HD as a journey, and the people who are affected with it as explorers. Their knowledge is rare and precious for the rest of society.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

I am so grateful about HDYo… so for me it’s a natural choice to get involved into it. Among to national associations, HDYo is really a crucial trans-national HD users movement and I am proud to be, modestly, part of it.

In France, HDYo is unfortunately not very known yet. So this year, I will present HDYo to all the French Associations. From there, I will try to be a facilitator between France associations and HDYo. I hope some of the other associations will join me as an HDYo Rep, to strengthen the acknowledgement about HDYo.

Contact Emilie

Germany

Michaela

, HDYO Rep

My name is Michaela, I’m 39 years old (as of Feb 2014) and live in Stuttgart, Germany. I work as an IT Coordinator for Daimler Trucks, Buses and Vans. I grew up in a Huntington’s Disease family. I was told about HD at the age of 15. My Dad died of Huntington’s in 2002. HD has always been a part of my life.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

I like the idea to have local HDYO Reps all over the world to spread the word about HDYO, give HDYO a face and enable the local people to learn about HDYO.

I want to give as many speeches on youth support in Germany - including highlighting HDYO as a major resource for young people. And I want to learn the needs of young people in Germany and make a huge step to improve the available youth support in Germany.

Contact Michaela

Norway

Erlend

Erlend, HDYO Rep

Hello! my name is Erlend I come from a small town northern Norway, Mosjøen. I’m 20 years old. I play football in my spare time (every week) I enjoy cycling in the summer and go to the gym meet friends and work out. I also like to spend time with friends and family. I’m a student, studying industrial mechanics.

I was told about the disease when I was around 16 years old, I was tested for it when I was 18 and I have the genes, It was 50/50 and I got it so I think that’s just a new challenge in my life, but I know I can still have a good life even if I had I have the genes.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

I think that’s really great! I said yes for a reason, as I’m really excited to get more and more involved with HDYO. I started as a hdyo.org translator after my first summercamp and became a HDYO reps after the Barcelona YAWG meeting. This is something I really want to do.

I will do my best to show the local community where I live more about HDYO.org (Start with my school, have a speech for the teachers and the students) I also want to give out hdyo.org wristbands and t-shirt .

I want to start where I live, and do my best to spread awareness about HD, and the hdyo.org site for young and less young people. I will also join a meeting in Oslo the capital of Norway, with the Norwegian Huntington’s Association in April.

Contact Erlend

Ireland

David

David, HDYO Rep

My name is David and I’m 23 from Dublin, Ireland. I am the HDYO international representative for the Republic of Ireland. My day to day life consists primarily of music and having fun one way or another! I am a musician and have been playing music for as long as I can remember. I teach guitar lessons, record and produce music videos, play bass in a band, compose video soundtrack music and direct the Fingal Gospel Choir. Busy times! During my time studying Music at Dundalk IT I wanted to write a thesis on the effects of music therapy in a health related area. When I read up on Huntington’s disease, its symptoms really fit the beneficial description of music therapy. After researching the benefits music therapy has on HD, I wanted to take it further. So I joined the HD Association of Ireland, and I am now a board director. I will be using my position to pitch ideas regarding music in the HD community.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

Being a HDYO rep is great in terms of the platform we are given to help the youth of the HD community. It was truly an honour to even just be asked to the training day in Barcelona! I loved every minute of it, and I found myself really wanting to pursue it in the future.

I hope to raise awareness to as many young people as possible across the country through giving a presentation on HDYO and what it offers. A HDYO rep is like a signpost that directs those affected by HD to somewhere they can understand and learn about their circumstances appropriately and clearly. I really hope I can make a difference through this process!

Contact David

Northern Ireland

Sarah-Louise

Sarah Louise, HDYO Rep

Hi, my name is Sarah-Louise, I’m 24 years old, from Northern Ireland. I am a newly qualified Psychiatric Nurse, currently working with some HD patients receiving end of life care. I am also a family member, as my grandmother had HD. As of yet none of her 7 children have showed any symptoms of the disease. I got involved with my local HD association as I hope to become a HD specialist nurse sometime in the future. I am also a newly appointed board member with The HDA Northern Ireland and hope to help out as much as I can.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

I am very excited to become a HDYO Rep and get involved with what’s happening all around the world, as well as sharing new ideas about how we can support people in HD families, their carers and give new insight to professionals about the illness.

As a HDYO Rep, I hope to raise awareness of HD in my local area and across Northern Ireland as whole. I would also like if The HDA Northern Ireland could work together with HDYO to support families impacted by HD.

Contact Sarah-Louise

Poland

Marianna

Marianna, HDYO Rep

I’m Marianna from Poland. I’m a pharmacist and love this job because it’s about helping people. Privately I help Dad, who has HD, which is tough at times but allows me to understand HD family members better. In my free time I’m a HDYO and Polish HDA volunteer which brings me lots of satisfaction. I’m also a big fan of traveling, reading the books and watching Friends and Big Bang Theory episodes (let’s face it, I’m kind of addicted…).

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

Getting involved in HDYO activities made me stronger. When you know about all these people coping with HD every day, you realize that you are not alone. Also talking about HD makes me more open and not as scared as at the beginning of my HD journey. Being a HDYO Rep is a completely new way to tell as many people as possible about our wonderful Organisation (yea, I mean HDYO!). Everybody should know that we are here to help young people who need the special support and positive attitude for the hard days. I feel we have to spread the word about HDYO all around the world!

My main goal is to reach the HD professionals who have not cared about supporting HD families before. I know I have to keep reminding them that young people affected by HD have their special needs and may find HDYO extremely useful (like I do!). Also I know it is important to update Polish HD Families about what we do to encourage them not to hide HD topic anymore.

Contact Marianna

Spain

Noelia

Noelia, HDYO Rep

Hi, my name is Noelia, I live in Madrid, Spain. I am 20 years old. My grandma had HD and several of my cousins are 50% risk for the disease. My mum is not carrying the HD gen, so I am not at risk myself. I am studying to be an Speech and Language Therapist at the Univ. Complutense of Madrid. I am a nutrition technician.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

I am Vice-President of the Spanish HD Association for Youth (AJH) and I had been a volunteer for many years of the Spanish Huntington Association. I want to get many young people to get to know and join the HDYO and the AJH to develop projects and activities together in Spain.

Contact Noelia

Ally

British Columbia, Canada

Ally, HDYO Rep

My name is Ally, and I’m from Canada. I’ve been actively involved with the HD community for about 6 years now, and I really enjoy it. My mom passed away from HD, and 2 of out 3 of my sisters have been diagnosed with HD. I’m currently finishing up my pharmacy degree, so I’m pretty busy! On my down time, I like running, walking my dog, doing yoga, and making crafts!

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

I’m excited about becoming an HDYO rep because it will help me raise awareness in a more formal fashion. I am also looking forward to giving presentations to the public! Getting involved with HDYO seemed like a natural thing to me to do as I’ve been actively involved with the HD community in Canada for the past 6 years.

I hope to do presentations to health professionals and the general public, and raise more awareness for HD.

Contact Ally

Catherine

Newfoundland, Canada

Catherine, HDYO Rep

Hi there! My name is Catherine, I am 21 years old, from Newfoundland, Canada. I just recently graduated from Memorial University of Newfoundland with a Bachelor of Nursing degree. Upon graduation, I started my career as a Neurosurgery/Urology nurse. Huntington’s Disease has been a part of my life ever since I can remember as my grandmother started showing symptoms of HD when I was just a baby.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

I think the HDYO Representatives program is a fantastic initiative and I’m so thrilled to be a part of it! I got involved with HDYO to help spread awareness in my community and to help eliminate the social stigma related to HD that still exists here in Newfoundland, Canada. The HDYO Rep program has provided me with the skills and knowledge to achieve these goals. In addition, it has allowed me to connect with HDYO Reps globally to share ideas. As a HDYO rep I hope to spread HD awareness and eliminate social stigma regarding HD in my local community.

Contact Catherine

Chelsie

Ontario, Canada

Chelsie, HDYO Rep

My name is Chelsie Legree. I am 22 years old. I am from Arnprior, Ontario, Canada, but I am currently finishing up my last year of Teacher’s College at Nipissing University in North Bay, Ontario, Canada. I will be a qualified teacher in a month, if only there were jobs! I enjoy baking, playing video games and have taken an interest in art. I knew that HD was in my family, but only found out that I was at risk when I was 18. I got tested as soon as I could and found out that I am gene-positive, pre-symptomatic. 1 out of 3 kids isn’t bad in my opinion.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

I think being an HDYO Rep will be extremely rewarding. I wish it was around when I was going through testing. After getting tested, I really struggled to find support because none of my siblings were positive and my local chapter scared me because it was all people who already had symptoms. I managed to dig deep, look past all the negative thoughts and find myself. I want to be able to give information about services and resources for other young people.

I want to provide resources for young people and point them to the services that are available. I don’t want any other young person to feel the way I felt during that time, which is why I think it is important to be available for others.

Contact Chelsie

Destiny

Delaware, USA

Destiny, HDYO Rep

Hi, my name is Destiny Hand. I’m 18 years old and am currently still a high school student and working with an elderly lady as my part time job. I live in a state you may not think even exists… That being Delaware. I love doing things outdoors, taking pictures (of every and anything), planning events, and helping others. I’m pretty shy if you don’t know me, but I do have a pretty crazy side… I’m not yet sure what the plans are after I graduate, but would love to get involved in some type of ministry- so I’m just waiting on God’s direction. My mom passed away from Huntington’s Disease when she was only 38 and I became her care-taker for a majority of my life. Yes, it was difficult, but I spent time with her that no one else had and I would never trade that time for anything. Now, my 19 year old sister is showing symptoms and I feel like my life is on replay. It’s a difficult thing to watch, but with God’s strength my family and I make it through. I, as well as my other two brothers are also at risk. I have chosen not to be tested at this point of time in my life because I don’t feel like it would benefit me. If I was tested positive, I would probably become depressed and not be as active as I am, and if I tested negative I would feel guilty because I would have to watch my siblings suffer (if other siblings are positive) something that I somehow escaped. I have chosen to try to make something positive out of a negative circumstance in my life. For quite a while I was angry that Huntington’s was in my life. Now, I have accepted it, knowing I wouldn’t be who I am today without it, and have chosen to get involved in the community as much as I can. I’m open about telling people that my mom passed away from complications of the disease at an early age and that my sister is now symptomatic. I also am working on organizing my second walk for Huntington’s Disease in my area on May 17th! I encourage you all, involved with HD or not, to let people know that this Disease exists and to try to bring it to a stop one step at a time!

Contact Destiny

Emily

Minnesota, USA

Emily, HDYO Rep

My name is Emily Breen (formally Viau). I am 29 and I live in Minneapolis, MN with my husband Michael. Professionally I am a Project Manager at a technology company in the Minneapolis area. I have been a volunteer with HDSA/HDYO for 17 years since my mom was diagnosed with HD when I was 12 years old. I have helped coordinate our Hoopathon for the past 15 years and I’m also involved in our COE fundraiser dinner called the Blast along with many other events. I am also in my 3rd year on the Minnesota Chapter Board.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

I decided to get involved as a Rep and I believe that there is more I can offer to the HD community as a volunteer and there is a HUGE need to support, educate and empower the young people in our community! HDYO is an amazing resource and group that I wholeheartedly believe in. Living positively with HD in your life is an incredibly powerful message and I hope I can help spread that message and make life just a little bit easier for even just 1 person that is touch by this terrible disease.

As a rep I hope to educate people about HD and what HDYO is trying to accomplish. I hope to tell as many people as I can about the amazing network of support that is out there and the educational materials that are available to them. I have plans to speak at various Education Days, Support Groups and Chapter events in my region.

Contact Emily

Emmy

Wisconsin, USA

Emmy, HDYO Rep

My name is Emmy Lex and I am from Wisconsin, in the United States. I am nineteen years old and a sophomore in college at the University of Wisconsin-Whitewater. I am getting a degree that will license me to teach both elementary education and special education for children birth through third grade. I love to sing in my free-time. My mom has Huntington’s Disease, making me at-risk for inheriting it. Along with my mom, I have 3 uncles who were positive and they have had children that are now positive. It runs throughout my whole family. This is where my passion for Huntington’s Disease and fighting to find a cure came from. Along with being an HDYO Rep, I am on the Huntington’s Disease Society of America – WI Chapter Board and a member of the National Youth Alliance.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

I love the idea of being an HDYO Rep and think that it is an amazing program and will benefit many people. I got involved with HDYO because when my mom was diagnosed with Huntington’s, I felt really alone and like there were no other people my age going through the same thing. Through HDYO, youth can gain support and learn that they are not alone, which I think is amazing.

As a rep, I hope to connect youth to others that are dealing with many of the same things that I went through. I want to help youth that are impacted by Huntington’s Disease find the support that they need and probably do not know is available for them. I want to make a difference.

Contact Emmy

Erika

Washington, USA

Erika, HDYO Rep

I am an osteopathic medical student at Pacific Northwest University of Health Sciences in Washington State. I grew up in Northwest Washington State. My dad had HD and died when I was 11. At age 19 I tested negative for the huntingtin gene expansion. My sister tested positive on the same day and has been symptomatic since her mid-twenties. I try to make the most of every day, maintain a positive attitude, and persevere through difficult situations. I enjoy traveling with my family and cooking healthy, delicious food.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

I am super excited about being an HDYO rep! Growing up at risk for HD often felt isolating and there was so much uncertainty. I feel lucky to have the opportunity to facilitate support for young people around the world and remind them they are not alone.

As an HDYO rep I am looking forward to sharing the hope I have for a better future for people impacted by HD. I want to educate people about HD and remind everyone they are not alone in this crazy adventure.

Contact Erika

Jaclyn

Ontario, Canada

Jaclyn, HDYO Rep

My name is Jaclyn Skinner and I am from Ontario, Canada! I am one of the most friendly and outgoing people you could meet and love giving hugs  I currently work as an administrative assistant for Hydro One and am working on climbing that corporate ladder. My company is very supportive of giving back to the community which gives me the opportunity to be part of this HD community. I sit on the executive as the Public Relations representative for YPAHD (Young People Affected by Huntingtons Disease); I am a mentor in the Youth Mentorship program and most recently, I’ve become a HDYO rep! I have been impacted by HD my whole life, which makes this fight against HD very close to my heart and why it is so easy for me to be a part of so many groups. I love the HD family that I have come to know and anticipate meeting more and more of you!

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

Being an HDYO Rep is an honour. It makes me feel good knowing that I’ve been recognized by the HD community and what I have been doing is making a difference. That’s also a big reason I became involved with HDYO – to make an even bigger difference with the help of people who share that same dream. #unitethefight

My biggest goal of being an HDYO Rep is to unite the fight. Going to conferences and training sessions just shows me that there are sooooo many of us around the world going through the same things and looking for the same cure. There is power in numbers and I think if we can get everyone on the same page with the same messages we could move mountains and be the last generation that has to know what the effects of HD can bring.

Contact Jaclyn

Lindsay

Ohio, USA

Lindsay, HDYO Rep

Hi! I’m Lindsay, I’m 26 and live in Cincinnati, Ohio. I’m a registered nurse in the cardiac ICU at Cincinnati Children’s hospital and also work a few shifts a month in an adult OR on the cardiac surgery team. I run full and half marathons to fundraise for HD and next year hope to run the NYC marathon as a part of the HDSA team. I’m getting married this December, have a husky, and enjoy naps. I like to consider myself one of the “original” members of the NYA and have been a part of tha in some way since 2002 when I went to my first national convention. I’m involved and soon to be on the board of the Ohio Valley chapter. My father is in late stages of HD, and both my grandfather and great-grandmother also had HD. I tested gene-negative in October of 2011 and have made it my mission to be an advocate for not only HD itself, but for the families and youth affected. I vowed to live my life to the fullest, no matter my results, and am doing just that!

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

I think being a HDYO rep is the perfect thing for me because it’s being there and giving hope and showing the families and youth affected by HD that there is information out there and others in situations just like theirs – including me! I got involved as part of my personal mission to help other families and youth in my part of the country.

I hope to help bring some positive light and relief to families as a rep. Showing them the website, giving them the information out there for parents to help talk to their kids and giving kids a place to ask questions and find information themselves at age appropriate levels is a wonderful opportunity. I know that growing up in a family with HD can be overwhelming and it feels like no one could possibly understand, but there’s a whole set of resources and connections that we can provide to help these young people and their families cope.

Contact Lindsay

Savannah

Colorado, USA

Savannah, HDYO Rep

I am a California native, currently living and working in Denver, CO. While I enjoy working at Trader Joe’s, I have been searching for a chance to work for a cause closer to my heart. HD has impacted my family for over 15 years now, since my dad first started showing symptoms. While it has been a heartbreaking process, growing up with my dad and watching his progression with HD has stimulated within me a greater appreciation for my life, and the beautiful people and things in it. I love meeting and connecting with new people, exploring new places, and being outdoors whenever possible.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

Being an HDYO Rep is a great opportunity to connect with fellow youth in my community who are impacted by HD. Not only do I gain connections with others, through shared feelings and experiences regarding similar family histories, I also have the resources to help these folks find the help they may need.

As an HDYO Rep, I aim to help as many community members as possible, by providing them with important resources, knowledge, and hope that they may otherwise would not have access to.

Contact Savannah

Seth

Massachusetts, USA

Seth, HDYO Rep

My name is Seth and I am 23 years old, currently living in Natick, MA. I graduated from UMass Amherst in 2013 with a degree in sport management. I have been involved with HD ever since my mom has been diagnosed with the disease for about nine years now. I have been actively involved in the HD community, doing my own hoops fundraisers for HD as well as supporting other local fundraisers. I am currently the President of the MA Chapter for HDSA in the US and the co-chair of the National Youth Alliance (NYA); the largest youth organization for young people impacted by HD in the US.

In my spare time I like to hangout with my friends, play basketball, go on runs, spend time with my family, or play outside with my dog. My dog is a four year old black lab mix and loves to meet new people!

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

I think being a HDYO Rep is a great opportunity for the young people in the US who are already involved in the NYA, to collaborate more with HDYO. I got involved because I find it important to unite all youth organizations that are fighting for the same cause, which is to support young people impacted by HD.

I hope to raise more awareness about young people who are impacted by HD. I think it is important to realize that adults are not the only people involved with HD and that there needs to be more support and resources for young people.

Contact Seth

Jordan

Mississippi, USA

Jordan, HDYO Rep

Hey ya’ll! I’m Jordan, 25 year old HD Advocate. I have been a part of the HD Community for 11 years, being involved in chapters, support groups and national level organizations since I was 13 and attended my first HDSA conference in Houston, Texas. After growing up and going to school in Austin, Texas I now live in Indianola, Mississippi in the heart of the Delta.

Tell us what you think about being a HDYO Rep and why you got involved with HDYO?

Being an HDYO rep is such a great opportunity, giving young people access to an international organization tailored to helping young people from a young person’s point of view. I wanted to be able to reach out to those people whom may not have a connection to the HD community, and provide the information needed to access it.

I hope to provide the Millennial Generation with information concerning HD and how they can give themselves the best possible lives being an HD advocate

Contact Jordan