<span class="translation_missing" title="translation missing: en.hdyo.land.loading">Loading</span>
Home Language What is HD? New to HD? Find Resources Research Ask for Help About HDYO News Videos Store Join Mailing List Kids Teens Young Adults Parents and Family JoHD Friends Professionals DONATE! Privacy Contact Us

Find Your Purpose

February 2, 2018

Huntington's Disease Youth Organization

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


The end of 2017 was such a whirlwind for me. I went from sharing my HD story at the Northwestern Symposium in Chicago, to feeling lost and mentally drained, to searching for my purpose in life. Each part has had a significant impact on my life and where I am today, and I have to constantly remind myself to focus on the present and forget about my past.

The Northwestern Symposium was an amazing experience because I had the opportunity to share my HD story and the impact HD has had on my life. With the help from one of my roommates (who I continue to hint at writing a book on me), I was able to speak in front of more than 40 people about my HD journey for about 23 minutes. The highlight of the day wasn’t that I had the chance to speak, but how I was able to inspire another young person impacted by HD. I will never forget what this young person told me, which was “If you were here to at least inspire one person, you did your job.” I was speechless, but knew the positive impact I had on this one individual.

A few weeks after this I fell into a dark place that no one ever wants to get to. I didn’t feel like myself and each day I would wake up and not feel like getting out of bed. The best way to describe it was that I was in a bit of a funk. Luckily, I knew I didn’t feel like myself and immediately reached out to some close friends for support. They told me anything from reaching out for support, to getting more involved in events and activities in Chicago, to not focusing every minute of each day on HD. But, what hit me the most did not come until after the new year when I got back to Chicago and had an amazing chat with one of my friends. He simply told me that each person needs to find their purpose in life and it will not happen overnight. He said to give it time and continue to just be myself and search for that purpose and what makes me happy in life.

Well, let’s fast forward to January 20, the day I had the opportunity to do a Ted Talk in my hometown of Natick, Massachusetts. After hours of practice and great support from the TEDxNatick team, my roommates, and a few close friends, I was able to successfully share my HD journey. I never would have thought that I would be able to speak in front of 800 people for about 13 ½ minutes. Did I mention I didn’t have any notes and had to memorize everything? It was such a great feeling to advocate for young people impacted by HD or another genetic disease.

What I learned from my Ted Talk is that I have a purpose in life along with everyone else. Sometimes it just takes longer to find it and realize this is what I have been missing these last few years. My hope is to continue to share my HD journey with others through speaking opportunities. This is just the beginning of something special…


Our content is split into different groups. Choose the group that best describes your needs for more information on HD.

Kids Teens Young Adults Parents and Family JoHD Friends Professionals