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!

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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.