Rare Disease Report

Tuberous Sclerosis Complex - The Play

AUGUST 19, 2015
James Radke, PhD
The play ‘Four Decades | One Community’ is about the Tuberous Sclerosis Alliance—a group of individuals, family members, caregivers, and clinicians who came together and over the course of 4 decades, created a unique, powerful, and functional community of advocates interested in one thing – improving the lives of people with tuberous sclerosis complex.

The play was written by award-winning playwright John Morogiello, who interviewed 22 individuals, family members, and clinicians about the disease and how they came together to search for a cure and better treatments for this devastating genetic disorder.

The play is read by an assortment of well-known actors and local celebrities to help raise awareness of TSC. Due to popular demand, there will be 2 readings this year—1 in Minneapolis on September 30, 2015 and 1 in Washington D.C. on October 8, 2015.  At the Washington event, Parks & Recreation’s Jim O’Heir, Dexter’s and Gotham’s David Zayas, as well as numerous other TV, theater, and local celebrities will perform a reading of the play.

Also at the Washington event, 11-year old TSC patient Evan Moss will be honored for his contributions to raising awareness of this rare condition.  While only 11 years old, Evan is already the author of two books about TSCMy Seizure Dog and My Life with TSC.

At the Minneapolis event, local actors and celebrities will also perform a reading of the play and the event will honor The Hable family, who has dedicated time and resources to support other families in the Upper Midwest as well as raise awareness of TSC throughout the country.

In an interview with Rare Disease Report, Kari Luther Rosbeck, president and CEO of the TS Alliance said, “This play is by no means every TSC story, but it does represent the battle waged over 40 years by the TSC community including its triumphs, challenges and setbacks.”

“Moreover, ‘Four Decades | One Community’ encapsulates the tenacity of everyone who’s played a role in the fight against TSC and the growth of the TS Alliance,” Rosbeck continued.
Tickets are still available online for both events. Please visit www.tsalliance.org/4decades for more information.

About TSC

TSC is a genetic disorder that causes nonmalignant tumors to form in many different organs—primarily in the brain, eyes, heart, kidney, skin and lungs. Symptoms vary with each patient, but the most common ones associated with TSC are seizures, developmental delay, intellectual disability, and/or autism.

images courtesy of the TS Alliance.

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