Rare Diseases Goes to Broadway

General
1

The rare disease tuberous sclerosis complex will be all the buzz among actors and theater goers in the Broadway district of New York City. At least for one night.

On Thursday, October 23, the Tuberous Sclerosis Alliance (TS Alliance), will mark its 40th anniversary with the world premiere and reading of the play, "Four Decades | One Community." Directed by Martin Blanco and written by John Morogiello. The play's scheduled performers include Julianne Moore, Stephen Belber, Mo Collins, Liza Colón-Zayas, Katrina Ferguson, Kate Flannery, Lori Gardner, Chris Hawkey, Jim O'Heir, Angela Pierce, Alex Skuby and David Wheeler.

"Four Decades | One Community" was developed by interviewing 22 tuberous sclerosis complex patients, family members, and healthcare professionals. Kari Luther Rosbeck, TS Alliance President & CEO said:

"This is a very unique play about a group of individuals who formed an alliance to combat this disease over the past forty years. It is by no means every story. But together, these powerful stories represent the battle of four decades and one community."

The reading will also give audience members an opportunity to give to the TS Alliance, the only US-based non-profit organization dedicated to finding a cure for tuberous sclerosis complex while improving the lives of those affected. For more information about tickets, click here.

During the evening celebration, Abe and Celia Mastbaum, and Drs. Jonathan and Bonnie Rothberg of The Rothberg Institute for Childhood Diseases will be honored for their commitment to tuberous sclerosis complex.

Tuberous sclerosis complex is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. Symptoms vary but the ones most commonly associated TSC are the central ones including, seizures, developmental delay, intellectual disability and autism. At present there is no cure for TSC however Afinitor (everolimus) is approved to treat:

  • Patients with subependymal giant cell astrocytoma (SEGA) associated with tuberous sclerosis who require therapeutic intervention but are not candidates for curative surgical resection
  • Adults with renal angiomyolipoma and tuberous sclerosis complex (TSC) not requiring immediate surgery.

http://www.raredr.com/articles/Rare-Disease-Goes-Broadway

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Thanks for informing us about TS, as well as this effort to raise awareness for it, Alan.

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I think it's great that they're helping to bring awareness to TS. I hope there are more events like this in the future. Perhaps it would get people to talk about more meaningful things than just the Kardashians.