Author: The HDYO Team

If someone had told me three years ago that I would have moved to DC and gotten tested for Huntington’s Disease I would have told them they were out of their mind. Even more so, if they would have told me that I would find a one of a kind social worker who would literally hold my hand through the most stressful experience of my life I would say HA HA YEA RIGHT. Well needless to say that’s exactly what happened. I moved to DC and got tested for Huntington’s and I didn’t do it alone. I had Chandler Swope to help me during it all and I can’t imagine what it would have been like to not have her during those late nights when the thoughts and fears plagued my mind, when my world seemed to be coming to an end.

The one thing I really respect Chandler for was her ability to stay professional while ALWAYS making me feel like she was my friend. Our relationship started when she filled in for our regular facilitator who had to go on maternity leave. I was instantly drawn to her because she really seemed to understand the tumultuous life of someone living with Huntington’s. She instantly made me feel like I was in good hands when I finally went to Georgetown to start the testing process she made sure to meet with me every week for coffee or lunch and made sure I was ok and talking about things and not bottling up all of my feeling and emotions. Sometimes she had to pull them out of me and I would leave feeling better. We joke about one scenario where I said CHANDLER YOU DIDNT HELP ME TODAY. She replied CHRIS I NEVER SAID I WAS THE PERFECT SOCIAL WORKER…YOU DID.

Leading up to the RESULTS appointment I knew I wanted Chandler to be the one to give me my results. I didn’t want this memory that would be burned into my head to be given to me by some stranger. I wanted to remember her sweet voice for the rest of my life as the one who told me I had Huntington’s Disease. Of course, she obliged and made the experience as pleasant as she possibly could. I’ll never forget.

Chandler continued to see me like clockwork after my results and I can’t say enough how vital her role in my life has been. I cried many tears on the phone with her at night or in the middle of the day whether we were on the phone or in person. She never wavered or made me feel like I had to suck it up. She is so firm and comforting at the same time. It’s a rare occurrence to have such a great support system, I’ve read other people’s stories about their journey through getting tested and they are heart wrenching. Not everyone has the support system that I’ve been so blessed to have. It hurts me to hear of people going through it alone. Chandler is helping so many people and at the same time and each of those people are feeling like they are her only client. I know that because I felt that way. I will forever be grateful for her and the role she plays for HDYO.

Last week we passed HDYO’s 6-year milestone. It really has been a wonderful journey for myself personally but more importantly for HDYO. When we started HDYO we really just wanted someone to benefit from our website which we’d put a lot of time and effort into making educational and accessible for young people. Little did we know that the response to HDYO would be hugely positive and we’ve achieved some wonderful goals which weren’t even on our radar when we started. Here are some things we’ve achieved in that time:

• Around 3 million people have visited HDYO’s website in 6 years
• Our website is available in 14 languages
• We’ve offered support to around 3000 young people and families globally
• We’ve done 7 youth camps on 3 continents with around 500 young people attending those HDYO camps for free

We’ve done this all with 3 staff (our 3^rd joined last year) and a great volunteer team. It has been truly a wonderful experience being a part of HDYO and watching it grow. Having founded HDYO it’s beautiful to see this creation do good for the community I hoped it would help. No matter what happens in the future I will always be so happy and proud when I think about HDYO and what it has achieved. Thank you to everyone who has been involved in HDYO and to everyone who has attended a camp or asked for support, we love being able to help young people impacted by HD and we are just as passionate to reach as many young people globally as possible as we were at the beginning.

The end of 2017 was such a whirlwind for me. I went from sharing my HD story at the Northwestern Symposium in Chicago, to feeling lost and mentally drained, to searching for my purpose in life. Each part has had a significant impact on my life and where I am today, and I have to constantly remind myself to focus on the present and forget about my past.

The Northwestern Symposium was an amazing experience because I had the opportunity to share my HD story and the impact HD has had on my life. With the help from one of my roommates (who I continue to hint at writing a book on me), I was able to speak in front of more than 40 people about my HD journey for about 23 minutes. The highlight of the day wasn’t that I had the chance to speak, but how I was able to inspire another young person impacted by HD. I will never forget what this young person told me, which was “If you were here to at least inspire one person, you did your job.” I was speechless, but knew the positive impact I had on this one individual.

A few weeks after this I fell into a dark place that no one ever wants to get to. I didn’t feel like myself and each day I would wake up and not feel like getting out of bed. The best way to describe it was that I was in a bit of a funk. Luckily, I knew I didn’t feel like myself and immediately reached out to some close friends for support. They told me anything from reaching out for support, to getting more involved in events and activities in Chicago, to not focusing every minute of each day on HD. But, what hit me the most did not come until after the new year when I got back to Chicago and had an amazing chat with one of my friends. He simply told me that each person needs to find their purpose in life and it will not happen overnight. He said to give it time and continue to just be myself and search for that purpose and what makes me happy in life.

Well, let’s fast forward to January 20^th, the day I had the opportunity to do a Ted Talk in my hometown of Natick, Massachusetts. After hours of practice and great support from the TEDxNatick team, my roommates, and a few close friends, I was able to successfully share my HD journey. I never would have thought that I would be able to speak in front of 800 people for about 13 ½ minutes. Did I mention I didn’t have any notes and had to memorize everything? It was such a great feeling to advocate for young people impacted by HD or another genetic disease.

What I learned from my Ted Talk is that I have a purpose in life along with everyone else. Sometimes it just takes longer to find it and realize this is what I have been missing these last few years. My hope is to continue to share my HD journey with others through speaking opportunities. This is just the beginning of something special…

“Love recognizes no barriers.  It jumps hurdles, leaps fences, penetrates walls to arrive at it’s final destination, full of hope.” – Maya Angelou

HD doesn’t have many positives, but I have been lucky enough to travel to many places while working with HDYO and I know many young people and individuals who have been afforded the same opportunity.  I have met so many amazing people and seen some of the most beautiful places I’ve ever come to know thanks to these opportunities. I’ve also learned so much – I’ve come to know that HD has no borders.  The HD community is the strongest, most compassionate and most dedicated group of individuals I have come to know.  There is also a universal language to the HD community – one of love, understanding and hope.

HDYO has taken me around the world I have noticed that no matter where I go that those I meet in the HD community are amazingly strong, brave and inspiring.  It doesn’t matter if there are one or ten languages being spoken in a room – most of the communication occurs with a look, the tone and passion in one’s speech and the massive amount of love shown to each individual.  When you are in a room with HD community, the message is clear, we are all one global family.  I hear many stories from young and old alike, but there are similar themes no matter where I am or what language the stories are being told in.  What I hear, and try to help those I’m speaking with understand, is that they are not alone.  HD can be quite isolating in one’s own community, but there is an amazing global community that is fighting with each other, for each other.  There is nothing more powerful than that.

I’m incredibly lucky to work for an organization that helps build bridges across the globe to ensure that everyone feels connected.  The young people I meet with all encourage me to continue to fight for them and alongside of them.  They speak of hope, they share stories of courage and most importantly – they are brave enough to bare all of this to ensure that the world is aware of HD and the struggles each family goes through.  We speak of this this often in our blog, but after our recent camp in Australia, I was reminded of just how strong and connected the HD community is.  

The world may put borders, language barrier and other things in the way, but the community will always continue to find ways to connect, grow and advocate because their voice is beyond powerful.  Your voice, your story is beyond powerful and never let anyone or anything try to quite you.

As we come to the end of the holiday season I have been thinking a lot about the people who I have encountered throughout the last year.  This in turn got me thinking about how many people we come into contact with as we journey through our lives.

On Wednesday (3^rd Jan) two of the incredible young people who attended our first Australia/New Zealand youth camp in Queensland last January met with me again here in Scotland with their lovely parents.  We had lunch and chatted about everything and nothing.  I can’t tell how much it means when families that we have worked with reach out to say hello just because they are nearby.  We are absolutely here to help young people and families when things are bad but it is also a privilege to be able to share their happy times to.  In a few days’ time, I head off to Australia for our second Australia/New Zealand young camp and I’m excited to meet up with our fantastic staff and volunteer team, returning and new campers.  The camps and events that HDYO run are only a small part of the work that we do and each has its merit, achievements and stories.  The impactful element of in person work is the connections that are made but everyone who attends.  The science of connection is an evolving piece of work and shows that we need to get more connected not less.  We need to spend time with people, hug more (did you know that there are scientifically proven health benefits to hugs?) and listen!!!!  However, it is a changing world and we need to adapt to that change and ensure that we still make connections, even virtual ones, powerful and impactful.  We need to make sure that children and young people know the difference between true reality and the reality portrayed on social media, are we equipping them with the skills, attributes and resiliency to be able to deal with the “real” world.

HDYO was founded because we needed more people to listen and hear what was happening to young people impacted by HD and its been an exciting journey that has seen us reach people in over 70 countries, help change attitudes, encourage changes in clinical practice and build new connections where previously there wasn’t seen to be a need.  By working with children, young people and their parents/guardians we can help build the resiliency that they need to deal with HD and differentiate between real and fiction.   Age and stage appropriate education is one element of that build process but we need to use tools like empathy, understanding, patience and nurturing to set the foundations solid.

HD is a difficult journey and one that we don’t have to take alone.  The HD community is a small but powerful, understand and supportive community.  We are all connected by many commonalities; HD, caregiving, surviving, testing, not testing, successes, failures, love, loss etc we all have a story.   We invite people to share our journey through our stories so I encourage you all to tell the true story not the sugar coated polished story.  Life is not all good times but it is in our darkest times that we can see the most light.  People always learn more from one another when we get personal and true.  It’s your journey make your connections count!

Get involved, be heard and listen to those who can’t speak…yet

www.hdyo.org

info@hdyo.org

In this #SeasonOfSmiles I thought I would tell you a little bit of my story and why I am being who I needed when I was younger.  Huntington’s Disease (HD) is a rare neurological disease. So rare in fact, that when I first found out that I was at risk of inheriting HD five years ago, I had only ever heard of it on an episode of Private Practice.

My grandmother passed away from Huntington’s Disease in February of 2012. At the time, I was already a mother to my fourteen month old daughter, Sophie. It was devastating to lose my grandma and at the same time learn that I was at risk of inheriting a fatal genetic disorder. Even harder to swallow was the fact that my daughter was too. Learning that we were at risk was one of the most challenging times of my life. I felt very isolated in my journey, and as if I had no one to talk to that could understand the reality I was facing. I didn’t know anyone else who had a family history of HD or who had even heard of it before. My husband was a great support to me during this time, but even he could not relate to what I was experiencing. Being at-risk made me feel entirely alone.

In the spring of 2012, I went through genetic testing to learn whether or not I would eventually inherit Huntington’s Disease. I tested negative, which means that I will never develop HD, and my daughter Sophie never will either.  Learning that I was no longer at risk didn’t end my journey in the HD community, it kick-started it. I have made it my personal mission to spread awareness and be there to support other young people who are going through similar feelings of isolation. My involvement with HDYO has only strengthened this resolve.

This past summer, I had the incredible opportunity to be a part of HDYO’s North American Youth Camp in Maryland. This camp gives young people affected by Huntington’s Disease an opportunity to come together with people who understand the challenges associated with living in a family with HD and being at risk. It is such a unique opportunity to be surrounded by people who instantly understand and relate to your experiences, and because of this, camp can be life-changing. Camp offers educational sessions around topics that affect young people such as caregiving, relationships, testing, and grief. Campers are divided into age groups with professional staff and volunteers for sharing sessions on topics related to HD. Finally, campers are also given a chance to escape the challenges and responsibilities of their daily lives and just have fun.  With the kindest of supporters via #AmazonSmile (smile.amazon.com/ch/45-4955538) HDYO is able to offer art & crafts, sports and games for down time as well.

I didn’t know what to expect when I arrived at camp. I volunteered at camp with the expectation that I would be able to have a positive impact on the campers. I wasn’t prepared for the impact that they would have on me. For the better half of a week, I was surrounded by some of the most courageous, inspiring and beautiful souls I have ever had the pleasure of knowing. The strength and resilience that the campers have had to show in their young lives left me speechless at times and in tears at others. My heart has been touched by each and every one of them, and I am committed to work harder to fundraise, advocate and find a cure for all of them and their families, as well as my own.

When HDYO announced that they would be holding their first ever Challenge Week, I knew I wanted to be a part of it. I was so excited to be able to spread awareness of Huntington’s Disease and HDYO while completing my challenge. I decided on challenging myself to complete one random act of kindness each day for a week. I was talking about it at the dinner table with my family, and Sophie decided that she wanted to join me. We began brainstorming what our tasks might include, but wanted to leave room for spontaneity too. I have always told Sophie that if you are able to help someone, you should. Having her involved made the challenge so much more meaningful, as she is the future of HDYO. (She’s already asking if she can volunteer at camp when she’s big enough!)

Throughout the week, Sophie and I were successful in completing our challenge each day! Some of our tasks included writing letters to senior citizens, leaving quarters in vending machines, and bringing muffins and coffee for the staff on the night shift at the hospital.

Each night we would reflect on our task and how it made us feel to help others. We looked forward to bringing a smile to someone else the next day, and we have continued to encourage each other to do little things to help others. At times it feels like we are surrounded with so much negative. We need to focus on being the good in the world. HDYO inspires me to do that. 

HDYO is that little bit of sunshine and positivity in so many young peoples’ lives. I am honoured to be a part of an organization that is dedicated to building up young people, our future. I am so inspired by the amazing staff, volunteers, and youth that make up this organization. They are my “why”, and I will continue to advocate and fight for them.

“BE WHO YOU NEEDED WHEN YOU WERE YOUNGER”

I was really struggling to figure out what I wanted to write about this time.  I had a few ideas, but whenever I went to write I couldn’t get the words to make sense.  I then read a quote in an article and it all became clear.  The quote was “My Life is Mine.”  This quote helped me put some of my thoughts into perspective.  For me, this quote has a lot of meaning, but three themes really stood out:

1. There is power in speaking things into existence. This doesn’t make things easy, but it gives someone a sense of ownership and control over things that makes them a force to be reckoned with should anyone try to tell them otherwise.
2. It tells someone they don’t have to ask for permission to follow their dreams or be unapologetically authentic. When we live life for others, we question our own needs and wants regardless of if that is in our best interest.
3. It gives us the freedom to connect with others in a way that is incredibly scary, but also incredibly rewarding. Living your life for you gives you the ability to develop a sense of empathy for the world around you.  Opening up, being vulnerable, trying to experience the hardships of other’s is terrifying, but those who are their true selves know that the fear is worth the reward.

I speak to these ideas quite a bit when I work with young people, but I want to focus in on number three for a bit.

I have had the chance to go through the testing process with many young people in my role as a youth worker.  Testing (as you all know) is an incredibly personal and terrifying decision and I’m humbled that I have been allowed to go on the journey with some.  I didn’t have the right phrase before reading this article about how to approach working with people contemplating testing, but it really is “your life is yours.”  There is no right answer to “should I test” or “when should I test,” but what I often talk to young people about is “what question are you hoping to answer with testing?”  What I’ve found is that many have questions about the future (the stuff that all young people think about – what they want to be, what will their future look like with that career and how do they get there).  HD has a lot of unanswered question and it can often seem that the one clear answer someone can get is through getting tested.  It gives you a concrete answer.  Granted, this is a huge piece of information that has been hovering in the back of many, but obtaining that piece of paper doesn’t always answer all the questions.  

When someone approaches this process with the mindset of “my life is mine,” they often consider all the information they gather in a different light.  For some, they still go forward with testing as they have decided that the information will help them navigate the future and they are in a place to process the results.  For others, they realize that they have a lot of things they want to consider for themselves or the path they have chosen won’t change knowing the result at this given time and they decide to wait.  And some simply say they still don’t know what they want to do and keep moving forward and figuring life out as it comes.  My goal is to support young people in whichever path to help them understand that their life is theirs.  HD is a huge component of that, but it is not the singular thing that defines who they are.  The HD community is by far the most empathetic group of people I have come to know and I think it is because, by sharing their HD journey, they open themselves up to vulnerability.  Many people don’t understand HD and it can be scary to share that part of your life with others, but when you do – you are telling the world “My Life is Mine” and you are choosing to live it in an authentic fashion. 

Elizabeth Kubler-Ross once said “The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”     

By all of us living our best lives we open ourselves to truly know and understand each other as well as be vulnerable because we know that we grow by sharing in other’s experiences.  That is my definition of empathy and what challenges me each day to get up and do the best I can for other’s and for myself.

One of my favourite quotes is from is from Audrey Hepburn:

“Nothing is impossible, the word itself says I’m possible”

This changed my mindset from one of can’t to can.  A simple change that opens up a whole new world of possibilities.

In 2007 a colleague and I who worked for Scottish Huntington’s Association spoke at HD World Congress about the importance of supporting and educating young people about HD in an age and stage appropriate way.  To say that there was resistance from the whole community is a bit of an understatement, the majority believed it was wrong and impossible.  Ten years on the complete opposite is believed; it is possible and it is the right thing to do.

Today our impossible dream of treatments and a cure for HD is no longer impossible, but one we can all be involved in reaching.  I am currently at Huntington’s Study Group Conference in Denver, Colorado, listening and being inspired by the hundreds of people whose main goal is to help families impacted by HD.  Tomorrow we welcome families to the conference and this, for me, is what makes the HD community possible.  The journey towards effective and efficient treatments and a cure is the partnerships and collaboration that happens within our little world-wide community.  We all need to work together, we are all important and we are all dreaming the same dream.  We all have a role and we are all need but we are never alone.

Each and every one of us, no matter our connection to HD has a role to play, you just need to figure out what that role is.  Whether it’s taking part in research, to sharing your story on social media, to handing out flyers about support groups to lobbying governments these roles played by families are vital to achieving the impossible.   HDYO started as an idea that Matt told you about in our last blog but look what that impossible idea has become.  Today HDYO is a global organization that reaches 2000 people a week.  Our content is available in 14 different languages, we organize youth camps in North American, Australia and New Zealand and Europe, we have a dedicated youth service in US, we provide training and support to professionals working with families and we run an online support service via our website.  We do all this with a staff team of 3 and a tiny budget but we manage this with a dedicated team of volunteers and supporters.  Someone would say what we have done is impossible but together we all believed in the I’M POSSIBLE.

SO the next time someone tells you it’s impossible remember what Audrey Hepburn says “NOTHING IS IMPOSSIBLE, THE WORD ITSELF SAYS I’M POSSIBLE.  If you need some proof of this you should check out some of the amazing things people did for #challengeweek.

If you would like to find out more about how to get involved get in touch at info@hdyo.org

With HDYO’s Challenge Week starting this Sunday, I had to take the opportunity for my first blog post for, INSIDE THE YO, to discuss the opportunity that everyone has in the HD community to challenge ourselves to do good by helping others.  HDYO Challenge Week is meant to challenge anyone to choose something they have been wanting to accomplish for a while and make it happen between October 22-28!  Check out HDYO’s Facebook page for more info on Challenge Week.

As a reminder, INSIDE THE YO blog, is meant to be a bi-weekly post from HDYO’s working team to give you an inside look at who we are and how we think.  We hope you enjoy reading and take something away from each post to help you understand why we do what we do.

A quick background blurb about myself…..I am a co-founder and current volunteer chairman for the Huntington’s Disease Youth Organization (HDYO.org).  I grew up in a family that was impacted by HD as my Mom passed away from HD in 2011 after a courageous 15 year battle.  She taught me to do everything I can to not let HD win the battle so I have dabbled in everything I can from holding hoopathon fundraisers for 15 years, to helping create HDYO, to working with pharmaceutical companies that have medications for HD, to participating in research studies, to speaking around the world to inspire others.  I have been blessed to not carry the hereditary gene mutation for Huntington’s Disease, but my fight against HD is stronger than ever as some of my best friends will one day start having symptoms of HD and I can’t let that happen.

One of the toughest parts of getting involved in the fight against Huntington’s Disease (or any disease/disorder that impacts your life) is taking the first step and finding what truly makes you tick.  For some that might be fundraising, or raising awareness by doing public talks or attending conferences, or doing advocacy work with your government, or volunteering with your local non-profit, or participating in clinical/observational trials at your local research center.  What I have also learned is that over time, some of your interests may change and you have to find a new activity that matches your current interests.

An example for myself was that between the ages of 10-23, all I wanted to do was raise money for HD through my family’s hoopathon events.  Between going door-to-door or contacting corporate sponsors or asking family/friends, I loved raising every single dollar!  But then something changed and I got burnt out fundraising and started to dread asking people for money.  This led myself to stop fundraising, but to find new ways to use my skills and interests to make an impact from a different angle.  It was perfect timing as at that time, Matt Ellison had just thrown out the idea of creating HDYO so I jumped at the opportunity to join him and have been having fun giving back ever since.

While at HDYO, I have paid a lot of attention to how and why young people get involved.  Our goal at HDYO is to support and educate young people while growing up in HD families, in hopes that we can motivate them to give back as giving back is one of the most rewarding feelings in the world.  While I loved fundraising while growing up, I also know very well that fundraising is NOT for everyone.  In fact, I usually discourage young people who want to initially get involved to start fundraising.  One activity I have found more and more young people to enjoy is the opportunity to participate in observational/clinical research.  There are more and more research studies in the HD space today than ever before and lots of easy ways to participate.  I have had the chance to participate myself, from observational trials like EnrolHD, to Predict HD, to other smaller studies studying health and wellness.  Most people are a little scared of the thought of being a “research participant” , but I assure you, it’s much different than you’d ever think.  To de-bunk the thought of “research”, I helped create a couple videos that walked through a research study that you can find here:

What is Predict HD?

https://www.youtube.com/watch?v=-IyeXSQWqok

Collection of CSF:

https://www.youtube.com/watch?v=gJTCL–7TW4

Research is so incredibly important and joining at a “young” age is a great way to accomplish a handful of things.

• Make a difference that will potentially lead to new treatments for HD (or any disease)
• Opportunity to meet with and ask lots of questions with healthcare professionals that specialize in HD (or the disease/disorder that you are there for).
• Research usually doesn’t take up much of your time and most studies even compensate you with a little cash that you can use to buy yourself a special something!

At this past June’s HDSA National Convention, I attended a breakout session on participating in research studies and there was a young women who spoke about her experience.  She was what I call a super advocate as she had been a past president for her local chapters, a fundraiser, an advocacy tycoon and much more.  She really caught my attention when she said that in her current life situation she didn’t have the time to dedicate to all the things she had done in the past, but she still wanted to stay involved so she looked to research participation.  She talked about how she thought she would miss the fulfillment she got from all of her fundraising and advocacy, but she was surprised by the incredible satisfaction she got after she walked out of each research trip.  She felt she was truly making a difference in the fight for the future of the HD Community by speeding up the process to bring new treatments to market.  She also personally felt satisfied by the ability to speak with her HD healthcare professionals to stay informed and up to date on treatments and other upcoming opportunities.

This really made a difference for me as sometimes it feels that encouraging young people to participate in research is crossing some boundary line, but I think many of us forget all of the good feelings and positivity that research participation can bring to young people (or any age).

Are you looking to challenge yourself for HDYO Challenge week?  Consider challenging yourself to sign up for a research opportunity!  Below are a couple links to check out if you are interested or just shoot me an email and I can connect you to a research site near you!  BJ@HDYO.org

Check out HDYO’s research page:

https://en.hdyo.org/eve/research

HDSA’s Trial Finder:

https://app.emergingmed.com/hdsa/home

Research is just one option.  Find what fits with your lifestyle and interests and challenge yourself to fight back against HD or the cause that’s close to you!

-BJ Viau

HDYO Board Chairman

I was watching a video last week of a speech I made back in 2012 at Stockholm Euro HD Network convention. I assure you all that I don’t watch my own talks as a hobby, this one just happened to show up on social media so I watched part of it and it got me thinking. At the time of the speech HDYO had recently launched and this was our first big HD convention in which we were able to get up on stage and talk about HDYO and our goals moving forwards. In order to talk about HDYO I needed to talk about the reason why it was needed – the huge lack of support for young people in HD families. I remember the speech very well (you can see it here if interested: https://www.youtube.com/watch?v=D6p8KDcy5Y8).

I used my personal experience of growing up in a HD family in England to show how isolating an experience it is for young people looking for support. I was really nervous presenting this (you can tell in the video as well), the reason for being so nervous was because I practically had every key HD association (HDA) and professional in front of me listening to me for those 20 minutes or so. This alone didn’t make me nervous, I was mainly nervous because I was telling people their work for families up until now was not enough and that young people were being forgotten in terms of support. I knew a lot of these people already so to say what you were doing wasn’t enough and that as a community we were failing young people was a big statement. Looking back I feel it was a significant speech. The quality of it wasn’t anything special, but the points I raised about the struggles young people face in accessing support were extremely valid ones and had not been raised on stage like this before. So it was an important moment for young people I think. It put supporting young people into the spotlight for everybody in the community and HDYO has kept that spotlight on the community (and ourselves) ever since. I want to just mention that progress has been made since 2012 by HDYO and by a number of HDAs around the world. We are very happy to see HDAs taking on the challenge of providing services that work for young people and HDYO will and does work alongside the HDAs in this challenge. Credit to those that have made significant progress. But we still have lots of work to do. What else needs to be done I will save for another blog post perhaps. In this one I want to validate why young people need support.

On one part of my speech I compared the support I had available to me at the time (nothing really) to what my parents had (lots of professional services) and questioned why we felt it was ok as a community that young people are essentially left to deal with HD by themselves yet we provide a range of professional services for adults to help them cope with HD? I understand support varies globally and many adults have no support for HD either. But in many countries, as a community, we have developed adult services over many years but nothing for children/young people. It’s this gap in support HDYO was designed and works hard to fill for young people and it is here where HDAs have been making progress as well, more progress than was made before HDYO launched I would definitely say. Until recently there was very little research to back up the impact we know HD has on young people and highlight exactly why they need support. That was until last year at another EHDN convention when we heard a talk from Lucienne van der Meer from Holland who had done a study on the impact of hereditary diseases on families. As part of that study she looked at adverse (bad/negative) child experiences of those in HD families, compared to those families with breast cancer and those with no hereditary condition in their family. It was eye-opening stuff. Granted the study was fairly small with 74 people from HD families, 82 from Breast Cancer and 101 ‘normal’ families. But it was still very revealing. Overall, in the study, young people in HD families were 52.7% likely to experience some kind of adverse childhood event before the age of 16, compared to 45% in breast cancer and 24.8% for ‘normal’ families. Let’s look at the details: compared to ‘normal’ families, young people in HD families were twice as likely to experience domestic violence, alcohol or drug abuse, divorce of their parents, suicide of parent or death of a parent. And three to four times more likely to experience abuse (physical, sexual, emotional).  Young people in families with breast cancer experienced less of these adverse events in every category but that’s not relevant to my point anyway. These stats essentially prove that young people in HD families are over twice as likely to experience traumatic and challenging events in their childhood as those in ‘normal’ families.

This is why young people in HD families need appropriate support. This is why HDYO had to exist. We see young people with these experiences all the time coming for support via our website or at our events such as the youth camps. It’s obvious for us being on the front line that these young people go through so much at a young age and deserve support to help them cope with their HD journey. When I attend a HDYO youth camp somewhere around the world I always get emotional when hearing the sheer scale of challenges some young people in HD families have faced. It is my inspiration to keep pushing for better support for these young people – the support they deserve. We must take young people’s issues seriously and we must take the support services they require as seriously as we take adult services.

To those young people reading this, if you feel an urge to fight for yours and other young people’s rights to support then get involved and make your voice heard. Demand equality for young people and adult services. If you don’t feel you have the same access to support for HD as adults around you, then there is work to be done and we need you to complain to us (HDYO) and your national HD Association. If enough people complain then the greater that spotlight on support for young people gets. We have moved from young people barely being mentioned in the support services for our community, to being a recognised area of need with some progress, but we need to push on and become an area where support for young people is equal to that of adults globally. To achieve that there is plenty to do in almost every corner of the world and your help and voice can make all the difference. Message me at matt@hdyo.org if you want to get involved.