“BE WHO YOU NEEDED WHEN YOU WERE YOUNGER” by Lisa Pollock

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”

 

Empathy, Vulnerability and Authenticity by Chandler Swope

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.

 

Imagining the Impossible, Achieving because I’m Possible

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

Challenge Yourself! – BJ Viau

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

The serious truth behind young people in HD families

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.

A Hope in the Unseen – Chandler Swope

I’m a firm believer that there is a power to positive thinking and planning.  I think we can all agree that life is hard and a good majority of it is out of our control.  The one thing we can control is how we take on challenges as they come.  You can focus on the negative side of something, or try to find some glimmer of something positive in a situation.  I try to always do the later- even when it seems impossible. Finding something good in the worst of moments helps me continue to seek more positivity and helps me recover from life’s blows just a little bit faster.

I know…I know. That is much easier said than done, but there is no better example of this than a lot of what I see each day and what I have learned working with others.

I’ve always had a passion for helping others.  I never thought I always had all the right answers, but I knew that I was always willing to listen and try to find solutions or just be a sounding board when there were no solutions available.  Although I was adamant about helping others, I wasn’t sure exactly what the path was going to look like.  When I was young (and admittedly a bit naive – as we are all at one time), I figured I’d find a job and instantly I would “save the world.”  Well, shockingly (or not at all) that isn’t how the world works.  My first few years in the field had several road blocks.  I kept finding myself in positions where contracts weren’t being renewed (meaning I was always feeling like I needed to look for work) and I was often working with populations where hope seemed impossible.  There seemed to be so many barriers for the individuals and families I worked for that I had moments of thinking “what is the point?”  I was working hard for my clients, but there were so many systems designed to keep them down I wondered how I could ever find anything good.

Happy Days

I kept pushing on and there was one theme that I kept seeing creeping its way to the front of my focus.  When things looked the toughest, when the families seemed to be left with nothing – there were still moments of laughter, moments filled with smiles and even an “it’s going to be ok.”  The ability to find hope in the unseen is what makes us as humans amazingly powerful beings.

This has been made abundantly more clear to me the longer I work with HD Families.  Truthfully, I had a lot of people caution me against taking this position.  The practical people worried about joining a small, start-up non-profit and the security of my job.  I told them that clearly all these past positions were no more secure.  They worried that it was a lot of responsibility.  I argued that this was the opportunity I had been waiting for to help create something amazing that made an impact.  And, lastly, they worried about burn out – “how will you deal with all the loss” they asked.  I responded that I didn’t know, but I was absolutely willing to share the burden with the families.

Does HD suck?  Is it full of grief and loss?  Can there be days where things seem like they can’t get much worse?  ABSOLUTELY.  But!!!!! There is an ability to find hope in the unseen in the HD community unlike I’ve seen anywhere else.  The HD community has taught me more about hope, resiliency, empathy and compassion then I ever thought I could learn.  I’ve always tried to be a positive person and find the glass half full, but I’m even better at it now thanks to you (yes you!).  Never let anyone or anything tell you that life is hopeless.  For all of you fighting the battle against HD, there is hope, you deserve the good things and you are not alone.  Thank you for helping me grow and learn.  I’m honored to be on this journey with you all.

HD3

Summer Full of HDYO

Hi Everyone!  For those of you who do not know me, my name is Seth Rotberg and I currently sit on the Board of Trustees for HDYO.  Just like many of you, I also come from an HD family and my mom was the first person in our family to have the disease.  I am originally from outside of Boston, MA (Best sports in the country!), but moved to Chicago last August for graduate school.  I could talk all day about my personal HD experience, but I am going to switch gears into my busy summer!

Can you believe summer is just about over?!  This has been one of my busiest and most traveled summers of my lifetime.  I had three weddings back in Boston, the HDSA National Convention, my Boston Celtics Heroes Among US Award Ceremony, and HDYO Camp.  On top of all of these events, I was taking a summer course and working at my grad position.  However, with all of this going on, I was constantly doing work for HDYO.  For those of you who “Like” our Facebook page, follow us on Instagram or Twitter (@hdyofeed) and are wondering who keeps making these posts, well here I am!  I guess you could call me the “Social Media Guy” or Social Media Coordinator to sound more official.

In addition to helping HDYO with social media, I also attended the HDSA National Convention this past June in Schaumburg, IL (Not Chicago) where I had the opportunity to reconnect with old friends and meet new young people impacted by HD.  Not only did I attend sessions, but I was able to help run the HDYO table and meet young people and families affected by HD.  You could even say I dressed up this year compared to every other convention where I would wear an HD dry-fit.  #AllGrownUp

 

Convention

Prior to going to HDYO’s 3rd Annual HD Youth Camp, I did something that I told myself I would never do again…I got another tattoo.  It took a lot of thought about what I wanted to get and made sure it was meaningful.  The idea came up when I was talking to one of my good friends, Jonathan aka JJL, and said we should get a matching tattoo that resembles our friendship #brotherhood.  I wanted a design resembling courage, family, and love.  We came across the tree of life and the rest was history!

Screen Shot 2017-08-29 at 2.51.38 PM.png

Although the tree of life may have different meanings, to me it resembles the courage I have with HD, the growth of me as a person, family and how important it is to me, and the love I have for positive change in society and people.  As you can also see, it says HDYO below it and I was a bit hesitant to get that since I hope I last longer than the organization (Hoping for a cure so this is a good thing!).  Yet, it was my buddy JJL who insisted on getting this (He comes from a non-HD family) because he says it resembles my HD journey and how I got to where I am today.  Once he explained it like that, I was in 100%.

The last thing I will briefly go over is the HDYO Camp.  It was amazing to see 48 young people (plus our amazing group of volunteers and staff) from across the US, Canada, and Puerto Rico, attend this event where they learned a lot more about HD and made ever-lasting friendships.  My role this year at camp was a bit different, but it gave me the chance to do more listening than talking.  I was able to take a step back and just hear from all the campers and see HD in a different perspective.  Each year I leave camp feeling rejuvenated and inspired by all the young people.  As I mentioned to them at camp, they are the reason I continue to fight with and for them and will not stop until there is a cure!  #FamilyIsEverything #PowerOfYouth #UniteTheFight

Shoot me a note if you have any questions.

-Seth Rotberg (Seth@HDYO.org)

Age is just a number!

Age is just a number!

I have very recently turned 39 and with a milestone birthday looming I have spent some time contemplating what I have achieved, what I still want to do and officially growing up.

I am lucky to be someone who has always enjoyed their job, even thought I never consciously decided what I wanted to be when I grew up.  Instead, I tried different jobs, that when looked at individually don’t really have a connection; Gym Receptionist, Mortgage Advisor, Youth Worker, Project Manager, Outdoor Instructor, Executive Director. Actually, people are the common link.  All of these jobs have been about working with people and helping them in one way or another.  Getting fit, buying their dream home, realising their potential, achieving their goals, conquering their fears.  The one group of people who have been more inspiring and who’s outlook on the world has always held my interest most, is young people.  As a demographic group, they are often portrayed in the most negative of ways by the media and society but I have personal witnessed the power of their goodness, determination, passion and optimism impact global change.

In 2007 the HD community were not fans of young people being involved or informed about the disease that impacts their lives.  However, a few individuals took a risk and decided to prove a global community wrong.  Over a 2-year period sheer determination and hard work resulted in two significant events: First European HD Youth Camp and young people speaking at World HD Congress plenary meeting in Canada.  Why are these significant?  Well, mostly because young people were having their voices heard for the first time on an international stage and there was support for young people to come together and engage with a community that had been reluctant to let them participate.  What young people did with these opportunities has resulted in a seismic shift within the HD community about the importance of educating and supporting young people.  This shift was not made by professionals lobbying decision makers or research papers being published in respected scientific journals.  This shift was made by young people standing up, speaking out, being determined to be heard and developing the education and support services that they needed themselves.  They raised funds, found the professionals they WANTED to help them, wrote the content, designed the platform and got everyone wearing the t-shirt!

  

HDYO was founded by young people, for young people and although some of those young people are now adults, young people continue to be the biggest influencers, contributors and volunteers.  The challenges are still as great but the enthusiasm and energy that young people bring is infinitely bigger. Whilst there are still young people without the appropriate support and education to meet their needs, HDYO still has a job to do.

SO regardless of growing up and getting old the young people I work with at HDYO keep me energised and inspired enough to not bother about the actual number.  Young people have gone from being a hidden group to being a group that a whole community is running to catch up with.  This community now realises they need young people and that they need to learn how to work and support young people.  Young people are attending conferences, challenging patient organisations, questioning clinicians and refusing to hide behind a stigma that has plagued their families for generations.  Whilst there is still huge amounts of work to be done to have global support and education for young people impacted by HD, the momentum doesn’t seem to be slowing.  We must show the true impact of HD on young people.  HDYO works tirelessly every day to get professionals, clinicians, family members, scientists and the general public to listen to the testimonies of young people on what living within an HD family means to them.  Young people are not asking for sympathy, not at all, their attitude is mostly positive and solution focused they are asking for understanding and open mindedness.

A bit about me – Cat Martin

Newly appointed Executive Director of HDYO, HD family member, travel addict, young people’s advocate, outdoor enthusiast, professional camera avoider.

Visit www.HDYO.org give us some feedback and if you want to help us make more of a difference donate to us.  Message me or get in touch catherine@hdyo.org if you want to know more.

Welcome to the HDYO Blog

Introducing HDYO Blog

The HDYO blog will be written by our staff, volunteers and a few special guests and posted every second Friday.  INSIDE THE YO, will help our supporters get to know us a bit more and understand why we do what we do.  We are always interested to hear your feedback and what you would like us to talk about.