Last night in Washington DC, I attended a reading of John Morogiello’s play ‘Four Decades, One Community’.
The script of ‘Four Decades, One Community
’ is directly from the text of interviews John had with 22 people involved with the TS Alliance (originally called the National Tuberous Sclerosis Association or NTSA) over the past 40 years.
And the end result is a brilliant piece of art, education, and inspiration. RDR gives it 3 3/4 stars. I will explain later why it lost a quarter of a star.
The reading was performed by a number of actors and advocates including Jeff Allin, Terence Aselford, Colleen Delany, Rosemary Frisino Toohey, Lori Gardner, Rev. Ann Gillespie, Terrance Heffernan, Stephanie Kaye, Jennifer Mendenhall, Carole Monferdini, and Jim O'Heir. The reading was moderated by Chris Hawkey.
In the clip below, Jim O’Heir and Chris Hawkey explain why they are proud to participate in the reading and to be part of the TS Alliance community.
During the hour-long reading, the performers brought the script to life and showed how the origins of the tuberous sclerosis community were based on strong willed parents coming together to find solutions to a plethora of problems. And over 4 decades, and through bouts of heartache, joy, frustration, and success, the community has seen amazing advances in how tuberous sclerosis complex (TSC) is managed.
Why not 4 Stars?
And my only complaint about the play is that the ending needs to be changed. One ongoing theme of the play is the future. Each decade had people building the community so that the next generation would benefit and the play ended with the current decade discussing the future. The play should include one more person who represents the future of the TSC community — author Evan Moss.
Evan was honored earlier in the evening for raising awareness of TSC with the publication of his 2 books ‘My Seizure Dog
’ and ‘My Life with TSC
’. Evan is 11 years old and has TSC.
Evan has had 2 brain surgeries to help control his seizures but still requiresa seizure dog to be beside him to help manage his condition.
And in a room full of actors, radio personalities, politicians, and CEOs, Evan’s acceptance speech was the best speech of the evening. He was funny, poignant, realistic, and hopeful. He is the future of the TSC Community. Hopefully, when 5 Decades, 1 Community gets read, Evan will be included.
Congressman Mike Fitzpatrick
Also honored during the evening was Rep. Mike Fitzpatrick (R-PA) for his work as a co-sponsor of a Dear Colleague letter to fellow members of the House of Representatives. Rep. Fitzpatrick also helped garner support for TSC research through the Department of Defense’s Congressionally Directed Medical Research Program.
For more information about TSC, visit www.tsalliance.org/