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Summer Full of HDYO

August 30, 2017

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:


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.

Seth's tattoo

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

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!


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

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