DNA Today: A Genetics Podcast3 Touko 2019

#102 Seth Rotberg on Huntington Disease

Seth Rotberg, a rare disease patient advocate and motivational speaker, joins the show to share his perspective on Huntington Disease (HD).

From 2011 – 2015, Seth served on the boards for the HDSA National Youth Alliance (NYA) and HDSA Massachusetts Chapter to continue his efforts in the HD community. He became the President of the HDSA NYA in 2012 and HDSA Massachusetts Chapter in 2013, where he led a group of dedicated volunteers to plan and execute fundraising and educational events.

Seth is still an active member of the Huntington Disease community and currently sits on the Board of Trustees for the Huntington’s Disease Youth Organization (HDYO). As a member of the working board, he connects young people to the proper social, emotional, and educational resources needed when coping with HD. His hope is to be a mentor for young people who face adversity by sharing how taking control of his HD journey has given him opportunity, fulfillment, and hope.

On This Episode We Discuss:

-How Huntington Disease Affects the Body and Mind

-Seth’s Journey with Huntington Disease

-Seth’s Family’ History and Experience with Huntington Disease

-Genetic Testing Process and Seth’s Advice

-Importance of a Support System

-Inspiration Behind Seth Becoming a Patient Advocate

To read and hear more from Seth check out his website, follow him on Twitter, watch his TED Talk and listen to his own podcast, Rare Unplugged.

Stay tuned for the next new episode of DNA Today. New episodes are released on the first Friday of the month. See what else I am up to on Twitter, Instagram, Facebook and iTunes. Questions/inquiries can be sent to info@DNApodcast.com.

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