HDYO! Huntington's Disease Youth Organization goes live

A bright day dawns for young people affected by Huntington’s disease as HDYO, the Huntington’s Disease Youth Organization, is launched. Created for young people, by young people, HDYO represents nothing less than a generation of people affected by HD, standing united to fight the disease together.

Growing up is hard to do

Things can be tough for anyone whose life has been touched by Huntington’s disease. For children, teenagers and young adults, the challenges of growing up in an HD family can be immense, whether it’s seeing loved ones get HD symptoms, caring for unwell family members, coming to terms with being at risk of HD, or even developing juvenile HD themselves.

The problem

Traditional support networks like the Huntington’s disease associations and online communities have done their best to support young people affected by HD, but catering to their particular needs has always been difficult. Recently, powerful social media forces like Twitter and Facebook have enabled young people to become more connected than ever – but good quality, understandable information has been in short supply.

The solution

An inspiring group of young adults from HD families has decided to take action. For the past couple of years, they’ve been planning and developing HDYO, the Huntington’s Disease Youth Organization. HDYO has just launched and its website at hdyo.org is now active. You can also follow HDYO on Twitter (@hdyofeed) and Facebook (hdyouthorg).

A combination of articles, forums, videos and features offers a multitude of information and support. The site is divided into ‘kids’, ‘teens’, ‘young adults’, ‘parents’, ‘professionals’ and ‘JHD’ to make finding appropriate information easy.

It won’t surprise any HDBuzz reader to hear that we are keen on empowering people through good quality information. We think that communication and openness are crucial weapons in the fight against HD. And we can’t think of a better way for the next generation of HD-affected people to take a stand against the disease than to inform, help and support each other.

A responsible team

One understandable concern with a self-support network like HDYO is whether the information and support provided will be dependable. But if HDYO conjures up visions of wild parties and kids running amok, set your mind at ease. The team behind HDYO has assembled a team of expert professionals to advise on their content and make sure that the advice and support given is safe and reliable.

A new day dawns

We couldn’t be more impressed by HDYO. Its founder Matt Ellison, and the other board members, are all HD family members who’ve chosen to fight HD by supporting other young people. We don’t think it’s an exaggeration to see this as a truly inspiring development – a generation of young people, standing together to declare that being affected by HD is nothing to be ashamed of, and offering positive suggestions and solutions for ways to make a real difference, from talking to kids about HD to tips for fundraising and getting involved in research.

It was a similar attitude of optimism and cooperation that led to the discovery of the HD gene in 1993. And we have high hopes that great things will come of HDYO.

The launch of HDYO brings to mind something written by the author Margaret Mead: “Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.”

Share on facebook
Share on twitter
Share on pinterest
Share on email

Latest Research Articles

HD and Histamines: Targeting Hybrid Receptors to Quiet Stressful Brain Talk

Published date: 15 July, 2020

Dopamine is an important chemical messenger in the brain that becomes imbalanced in Huntington’s disease. Researchers recently described a creative way to restore the balance and treat symptoms in HD mice, using an antihistamine drug that acts on hybrid dopamine receptors. It’s an innovative approach to HD therapeutics, but don’t start reaching for allergy meds ... Read more HD and Histamines: Targeting Hybrid Receptors to Quiet Stressful Brain Talk

Changing jobs: converting other cell types into neurons

Published date: 23 June, 2020

Researchers have known for quite some time that HD causes a progressive loss of neurons. But what if we could find a way to fill their place? In a new report, researchers used an intriguing strategy in living mice to do just that – they converted a different type of brain cell into neurons, with ... Read more Changing jobs: converting other cell types into neurons

HD Young Adult Study defines the sweet spot: symptom-free with measurable changes

Published date: 27 May, 2020

A new study headed up by Dr. Sarah Tabrizi, a pioneer in HD research, assessed pre-manifest HD young adults many years from predicted symptom onset with a battery of clinical tests. The goal of this study was to identify a sweet spot – a time when HD participants weren’t experiencing any observable symptoms, but when ... Read more HD Young Adult Study defines the sweet spot: symptom-free with measurable changes

Fountain of youth: HTT protein repairs neurons by maintaining youthful state

Published date: 13 May, 2020

A team of scientists has recently published their findings on how our bodies are able to repair brain and spinal cord injuries. They found that the huntingtin protein plays an important role in repairing damaged nerve cells. Repairing nervous system damage – the holy grail of medical science It has long been the ambition of ... Read more Fountain of youth: HTT protein repairs neurons by maintaining youthful state
Light and sleep

Light and Sleep

Published date: 7 April, 2020

Light & sleep Neurofilament Light Protein and Lifestyle Factors Commentary Words Dr Travis Cruickshank and Dr Danielle Bartlett

What does COVID-19 mean for Huntington’s disease families and HD research?

Published date: 6 April, 2020

COVID-19, short for coronavirus disease 2019, has taken the world by storm in almost every sense – many people have been infected with the SARS-CoV-2 virus, it’s created shopping pandemonium in stores, and many people are isolated at home. But behind that frenzied storm, scientists around the world have been working tirelessly to move research ... Read more What does COVID-19 mean for Huntington’s disease families and HD research?

Welcome to our new website!

Please bear with us while we iron out the last minute wrinkles! If you have any feedback about our new site, please fill out the form below.