Live storytelling showcase takes place Wednesday, May 11th at Regent Theatre

Arlington, Massachusetts (April 5, 2022) – The Northeast Region of the Huntington’s Disease Society of America (HDSA) and Stellar Story Company will host a live storytelling showcase event called “What Huntington’s Tells Us About Living” on Wednesday, May 11th at 7:00 PM at Regent Theatre. All proceeds support HDSA’s mission to improve the lives of people affected by Huntington’s disease (HD) and their families. 

In honor of HD Awareness Month, join five incredible people as they share true, inspiring stories about how HD has impacted their lives and shaped their outlook on what is most important. Storytellers include individuals who are gene-positive, caregivers, and healthcare professionals. 

“I am so pleased we have partnered with Stellar Story Company and uniQure to create an event where the stories that have touched me for years will now be heard by the public,” said Virginia Goolkasian, HDSA Northeast Regional Development Officer. “The stories about HD are people that find hope against all odds, the strength of the family bond, and love and fear. This is an event you do not want to miss.” 

"Since working with the storytellers, our team has expanded our understanding of HD considerably,” said Cheryl Hamilton, Executive Director of Stellar Story Company. “We have also discovered important truths about life that impact all of us. This is the power of storytelling. I am eager for the public to experience the stories as they truly are unforgettable." 

“It is so valuable to hear directly from HD patients, caregivers, treaters, and others who have been impacted by this disease,” added Daniel Leonard, Senior Director of Global Patient Advocacy at uniQure.  “It provides an understanding and personal perspective of HD that helps propel all of our work in this area.” 

For more information about the event, please contact Virginia Goolkasian (, 978-905-5588). Online registration and a donation can be found at HDSA.ORG/STORYTELLING 

The event will be sponsored by uniQure, a biotech company focused on developing innovative gene therapies for genetic diseases, including HD.


Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit or call (800)345-HDSA. 


Matthew Santamaria

Communications Manager 

(212) 242-1968 ext. 204