Huntington's Disease Society of America Center of Excellence

Summer Intern Connects with HD Community, Becomes Dedicated HD Advocate

Sarah Petitt

By Sarah Petitt

Editor’s Note: On the last day of her summer internship, our Public Relations Assistant Sarah Petitt wrote about her experience working at the UI HDSA COE. Petitt is now an assistant account executive for Sikich, LLP, in Chicago.

Early in May, I was going to be a University of Iowa graduate with a degree in journalism and no prospective career position lined up. Let’s just say the fear of unemployment constantly bellowed in my ears. I then saw an opening for a public relations (PR) assistant internship for the University of Iowa’s Huntington’s Disease Society of America Center of Excellence. I had a bare minimum understanding of Huntington disease, a fact that I warned PR Coordinator Sean Thompson about during my interview. Yet, Sean offered me the job, and it wasn’t until today, Aug. 9, my last day working for the UI HDSA COE, that I began to understand why he did.

The first part of the internship included extensively researching anything and everything about this neurodegenerative, incurable disease whilst also helping Sean prepare for the HDSA National Convention. As the summer continued, I increasingly learned more about HD by meticulously reading the medical journal articles of UI HDSA COE Co-director Jane Paulsen and others, all while attempting to translate the scientific, statistical information into language that is easy to understand. Near the end of the summer, I had the privilege of actually meeting people with HD, including presymptomatic and Juvenile HD.

I’ve worked in small offices and claustrophobic cubicles before, surrounded by infinite piles of administrative paperwork, research assignments, press releases and pitch letters. While working for the UI HDSA COE, I completed similar work with intrinsic dedication – something I never experienced before.

Every study I’ve read tremendously aids HD research, and I’ve learned just how imperative communications can be to help with the HD fight. Failed or proven hypotheses are a positive discovery that builds HD’s rainbow of hope, and I was honored to read these complex studies, write about them for the general public and work on social media to spread awareness about HD.

I used to imagine research studies as a group of scientists in a lab studying microorganisms through a microscope. Never did I picture a PR coordinator like Sean also in that lab, assisting with the study. PR can help communicate complex yet imperative information into words that are understandable by all. I soon realized that there are researchers, administrators, biostatisticians, neurobiologists and communication experts alike who work all day, every day to find a cure for HD.

Everyone involved in the UI HDSA COE is motivated to help people, young and old, affected by HD. This is not a job for them, but a calling. In fact, Stephen Cross, one of the UI HDSA COE research assistants, said that long ago he caught the “HD bug” and feels forever connected to people in the HD community. As I complete my last day, I feel that I, too, have caught the bug. It is an inexplicable, metaphysical connection to people affected by the disease, a disease that only a few months ago for me was a just another term.

Maybe my supervisor’s goal from the beginning was to hire an ill-informed graduate for a PR position and turn her into a dedicated HD advocate. I’m here to say he succeeded.

Contact: Sean Thompson, Public Relations Coordinator, Huntington's Disease Society of America Center of Excellence.