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Huntington's Disease Youth Organization

Boston’s busy bee

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

www.hdyo.org

July 29, 2015

HDYO News

Let us introduce you to Seth Rotberg! This American guy is one of many young adults around the globe who is coping with HD. The 24-year old lives in Natick, Massachusetts. Natick is around a forty-minute drive away from the state’s capital Boston, where he will move to this September. Seth was formerly the President for the Massachusetts chapter of the Huntington’s Disease Society of America (HDSA) and works for Boston Scholar Athletes, a non-profit organisation.

Huntington’s Disease first appeared in Seth’s life when his mum was diagnosed when Seth was a child. “It was tough to hear that my mum had HD but I didn’t know much about it and pushed it off”. It wasn’t until years later that he started to learn more about the condition. After seeing how HD might have an impact on his life he realised how devastating the disease can be.

“I didn’t want to live with the unknown and not knowing what may lie ahead in my future.”

Seth decided to get himself tested four years ago, his reason being that he “didn’t want to live with the unknown and not knowing what may lie ahead in the future.” A testing process is tough and most of the time, people prefer to go through this with their family. Seth wanted to go through the process on his own: “I decided to do it anonymously and didn’t tell any of my family, including my older sister and dad. I told a few of my close friends about it and had a friend come with me to the results.” Two years ago, Seth felt that he should tell his sister and dad. “I didn’t want to stress them out or worry at the time.”

Seth

The past few years encouraged Seth to start working within the HD community in the USA. “I truly enjoy giving back to the community and making a difference to the lives of others.” This definitely helps him while focusing on his passion: working with youth who may not have the same opportunity as others while growing up.

“I feel happy to meet other young people who share similar experiences and understand HD more than some of my friends.”

This passion and approach led to him becoming the President of HDSA’s National Youth Alliance, a position he held until recently when he stepped down. The NYA is essentially a HD youth group that covers America. Seth also started up a Youth Sharing Session, which allows young people to connect with one another. Next to this busy schedule, He also volunteers and participates in the Hoop-a-thon in Massachusetts and runs his own 3-on-3 basketball tournament – ‘busy bee’ is an understatement! “I feel happy to meet other young people who share similar experiences and understand HD more than some of my friends.”

The ongoing research for HD interests Seth. “I think there have been great strides and the researchers are getting closer and closer to finding a cure.” He tries to participate in some studies himself every now and then. “I took part in a few and I feel good because I know it is helping researchers get one step closer to a cure.”

Seth

Seth’s advice to everyone else out there coping with HD:

“Don’t get tested based on how other people feel about it, but on how you feel about it. You should get tested the proper way and when they feel ready for it. I think the most important part is to make sure you have a good group of friends and family to talk to in general about HD”.

Seth has contributed greatly to the HD community already at a young age and is to be applauded for his efforts and many voluntary hours put in to helping HD families and advocating for young people’s rights for support.

Seth’s mom sadly passed away on March 18th this year. She was diagnosed with HD around ten years ago, but was battling it for about 17 years.

“She lived each day to the fullest and continued to stay positive during her ongoing battle”

Nicole
News Team Reporter
HDYO

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