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)
Hello! Firstly, I am pleased you have found HDYO and I hope the educational content and support on our site proves helpful for you.
I come from a family that is affected by Huntington’s disease. My father was diagnosed with the disease when I was 7 years old and I grew up witnessing him progress with the condition. This had a big impact on my childhood, especially my teenage years – which 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 lack of youth support in HD families and felt this was an area I could make a positive difference 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 and support 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. It has been an amazing journey to see HDYO develop since launching in 2012, we have made some fantastic progress for young people impacted by HD! 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
Since 2013, due to demand on our services, my role as Project Coordinator for HDYO has been in a full-time paid professional capacity, I have completed my degree in youth services and have gained years of experience offering support to young people impacted by HD globally. I continue to work hard on improving support for young people across the world through 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 volunteer team who are fantastic! Please feel free to contact me directly at email@example.com. I look forward to hearing from you.
Chair of Board
Welcome to HDYO! This organization has been our passion since Matt first shared his vision to me in 2009. I come from a family impacted by HD and lost my mom back in 2011. My Mom, Debbie, continues to be my motivation and inspiration to grow HDYO in order to help more young people and families. I used to hold a fundraiser called a ‘Hoopathon’ (think basketball, although I can hula-hoop like a champ) to raise money and awareness for HD. Over fifteen years the event raised over a half million dollars! I am currently the Chairman of HDYO. This means that I do my best to strategically align our missions and visions with the needs of young people, families and our supporters. It’s any easy role because I get to work with a fantastic group of unselfish individuals who want to make a difference in the lives of young people.
I currently live in Chicago, Illinois (USA) where I am pursuing my MBA at Northwestern’s Kellogg School of Management and running a company, Fore Fun, in the golf industry. I have six years of experience in the pharmaceutical industry working for Lundbeck in their sales and marketing departments. Lundbeck was the first company to bring an FDA approved medication (Xenazine) to market in the USA for people with chorea associated with HD. HDYO is here to help you so please do not hesitate to reach out to anyone on our team. Together through support, education and involvement we hope to empower everyone to live healthier lives. You can reach me anytime at BJ@HDYO.org
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. I previously worked as the Specialist Advisor for Parents and Young People with SHA and I am now, very proudly, the Chair Person of the Association.
I am cared for my Mum, Gran and other family member who all fought Huntington’s disease and won their personal battles by living life to the fullest. My Mum was the most frustrating, amazing, inspiring and loving person I know, and my true hero along with my Dad.
My professional background is in youth work and social & community regeneration. I am currently a Quality Improvement Manager for Aberlour Child Care Trust; Scotland’s Children’s Charity. The role is varied and consists of working with our 42 services and 600+ members of staff to provide the best care, support and opportunities to the 6000+ children, young people and families that we work with. It is with these skills, knowledge and my professional and personal experiences that I am delighted to be part of HDYO and helping them raise the bar for young people across the world impacted by 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.
Lindsay is an Ohio native and Buckeye for life. Lindsay comes from an HD family where both her father and grandfather suffered from Huntington’s disease. She is an active member of the Ohio Valley chapter of the HDSA where her main focus is on awareness, support services, and opportunities for young people in HD families. A registered nurse by trade, Lindsay has acted as the ‘camp nurse’ and volunteer at HDYO’s North American Youth Camps. She currently owns her own retail clothing business and when she’s not nursing, running her business, or at a HDYO camp on the giant swing, you can find Lindsay traveling with her husband, Kyle, searching for the nearest Starbucks, playing with her husky pup, Penny, or running (she’s part of HDSA’s 2017 NYC Marathon team).
Seth is currently in graduate school pursuing a Master’s in Nonprofit Management at DePaul University in Chicago, IL. He has five years of experience working and volunteering with a variety of youth development nonprofits including; Huntington’s Disease Society of America, City Year, Boston Scholar Athletes, and the Natick Recreation Department.
He comes from a family impacted by HD which fuels his passion for supporting young people impacted by the disease. He has been active with the HD community since 2010, through fundraising and awareness efforts nationwide. He has served volunteer roles as the president of both the Huntington’s Disease Society of America’s, Massachusetts Chapter and the National Youth Alliance.
Dr. Bonnie L Hennig-Trestman (Dr. Bonnie)
I have over 30 years of experience as a clinical therapist and have worked with people who have HD and their families since October 1999. Prior to June 2017 I served as the Director of the UConn Health Huntington’s Disease Program. Currently I have a private tele-therapy practice. I provide on-line counseling to people at-risk for HD, people affected by HD, and to caregivers. I also treat people impacted by other neurodegenerative illness, as well as adults and adolescents who are experiencing anxiety and depression.
I provide educational lectures on various topics related to HD to healthcare professionals and to the public throughout the USA and internationally. In 2012, I created a state-wide HD symposium in Connecticut which was offered free-of-charge to the public annually for five years. I have been involved in HD research, conducting both observational and clinical trials. I am a member of the Huntington’s Study Group (HSG) and the European HD Network (EHDN).
In 2003, I began to lecture on the topic of talking to kids about HD and in 2005 wrote a book called, “Talking to Kids About Huntington’s Disease: a book for people who know children with HD in their family”. The book was revised in 2017 and it has been translated into five languages.
I have attended the North America HDYO camps as a staff member since 2015 and I am honored and thrilled to serve as a member of the HDYO Board of Directors.
My passion to support the HD community is matched by the enthusiasm of the staff at HDYO. I believe that HDYO is an excellent resource for kids young and older to obtain education, support, and friendship. HDYO is a place where you never need to explain what HD is and there is always someone who will listen and support you. All you need to do is reach out. We will be there for you.
Beth is college student from England who will be attending Coventry University to study psychology in 2017. After being a camper at the Euro2016 camp, she decided that she wanted to get more involved with support for other young people affected by HD. As a sessional volunteer for Warwickshire Young Carers Project, Beth has experience working directly with a wide range of young people; she feels that it is a major part of her life after being a young carer herself, as her father, auntie and cousins are affected by HD. Beth’s little sister (who is at risk), drives her to support young people affect by HD as she’d love to make the world a better place for her sister to grow up in.
When she’s not studying, you can usually find Beth running after her sister, browsing Netflix with her boyfriend, or, usually, stressing about how much revision she should be doing! Beth is a diehard Disney fan, a great lover of Pinterest and all things creative.
Lysle Turner is an Adventurer, Businessman, International speaker, and activist for Huntington’s Disease. He is the founder of the Turner Together Foundation, Turnvest Holdings and Co-founder of RCMin Commodities. He successfully climbed Mount Everest on May 19th, 2016 in the name of Huntington’s Disease becoming the youngest South African and person from the African continent to summit Mount Everest. He survived the deadly 2015 Nepal earthquake and avalanche that followed on Everest. He also holds a South African record of an unsupported speed climb of Mount Kilimanjaro in 11h07min.
Lysle’s involvement with HDYO started in 2013 when he met Matt and BJ at the EHDN Young Adults Working Group annual general meetings. In 2014 he took part in a speaking tour to spread awareness, education and inspiration in Australia. He also shared his story at the North America Youth Camp in 2016.
Lysle comes from a family impacted by HD. When he saw a family member become symptomatic it motivated him to make a difference in the HD community. Lysle lives in South Africa but currently enrolled (2017-2018) in a will one year Program of Leadership Development at Harvard Business School.
“For me, embracing a life journey and its detours put me in touch with my purpose. I believe that together we can move mountains for HD.”
Contact him at email@example.com