Upon departure, Thompson thanks HD community for determination

Tuesday, August 09, 2016


Sean talking pre screen side

Sean Thompson introduces "The Lion's Mouth Opens" HD documentary at the University of Iowa on Jan. 29, 2015 (photo by Owen Wade)

Editor’s note: Sean Thompson is departing the UI HDSA Center of Excellence after having worked here as public relations coordinator since 2009. He will be taking a new position as the communications specialist for the Iowa Reading Research Center at the University of Iowa beginning this month.  

By Sean Thompson

The articles, websites, videos, flyers, newsletters and tweets about our center, our studies and HD in general have been a joy to produce. But my time here has been about the experiences I have been fortunate enough to have, the people I have met and gotten to know, and the opportunity to have made a small difference and make peoples’ lives a little bit better.

My first major introduction to the HD community was at an HDSA National Convention, and my heart has been warmed numerous times at conventions since then. At the biggest annual meeting of HD families, I felt an incredible sense of hope and togetherness, and saw people making numerous connections and new friends. It's nice for HD family members to be in a place where everyone “gets it,” people don’t feel embarrassed because of a disease and HD doesn’t have to be explained to anyone.

That’s not to say that people in the HD community are not willing to talk about HD and how it affects their lives. By in large they are more than willing to, and I’m grateful for that. You invited me in to your lives so I could write an article or so I could learn more about the daily impact of HD, which would help me do my job better as a communications professional working to help those with HD. You were patient and understanding, articulate and inviting. And you were brave to share your story with me and with the world in order to raise awareness. If you are willing to use your voice, your blog, your camera lens, your tweets or your artistry to spread the word about HD, I hope that you’ll do so until we reach “casserole awareness” (a term coined by Team Run for HD’s Sara Dean). People in the HD community need and deserve the support that awareness breeds.

Sean and Sara
Sean Thompson and Sara Dean at the 2014 
Team Run for HD race in July of 2014 in 
Hoffman Estates, Ill.I’ve been inspired by the relentless effort, spirit and determination displayed by so many in the HD community. You display selflessness and proactivity when you travel far distances and take time off from work to volunteer for research. And it has paid off, because all the advances we have made in HD research are a result of your participation. But you don’t stop there. You organize impactful fundraisers. You serve on local HDSA chapters or you start a new organization to meet an unmet need. You bike across the country or climb a mountain or run a marathon to raise awareness and funds. And then you go home and continue doing all the unseen things, like taking care of a loved one with HD. You do so much with lots of positivity and love, and it has inspired me to have done my best every day to help you out in any way I can.

My time here has been fulfilled in other ways as well. I’ve worked with great colleagues who are all in it for the right reasons of wanting to help people affected by HD. I’ve had student communications staff arrive at our center as clueless as I was about HD when I arrived seven years ago, but with a desire to learn and make a difference. Together we’ve used our skills as communicators to do just that. I couldn’t have asked for a better group to work with over the years, led by Dr. Jane Paulsen, whose belief in me has done so much to get me where I am today.

It’s been an amazing seven years. I leave here with a wealth of experience, a bunch of people I am proud to call friends, and a most important, a cause that will always be close to my heart. Thank you to all those who make a difference in the HD community every day, and for letting me be a small part of that effort.