Kate Flannery & Adam Carolla headlined the 2012 Comedy for a Cure, benefiting the Tuberous Sclerosis Alliance at The Hollywood Roosevelt Hotel on Sunday, March 25, 2012. The evening was spent raising awareness about the disease while generous individuals donated via silent auction and live auction to benefit the Tuberous Sclerosis (TS) Alliance. The TS Alliance is the only national health organization in the United States dedicated to finding a cure for the tuberous sclerosis complex while improving the lives of those affected. The night brought in over $200,000.
Our dinner table included several families whose children have dealt with this crippling genetic disorder that causes tumors to form in vital organs such as the brain, heart, skin, kidneys, eyes and lungs. The tumors that grow throughout the body are the leading genetic cause of epilepsy and autism, as well as other serious health problems such as heart disease, mental retardation, facial disfigurement, kidney failure, lung disease, and even death. Every 20 minutes a child is born with TSC. It can strike any family, at any time, and for no known reason. But the possibility of a cure is closer than ever. In October 2010, the FDA approved the first medication with an indication for TSC.
Mo Collins (“Parks and Recreation,” MadTV) was the event’s MC. Many other celebrities, entertainment folks and research doctors were in attendance to support the cause. Comedic performances included those by Kate Flannery (“The Office”) and Scot Robinson of The Lampshades, and a raunchy shocking bit from Australian funnyman Jim Jeffries. Most of us had our mouths open in shock at many of the things Jeffries said–although a great deal was true. “Celebrity Apprentice” star and radio host Adam Carolla also had us howling in laughter as he recounted a trick Jimmy Kimmel played on him after attending the Grammys with one of the Dixie Chicks. He also described Donald Trump’s hair in great depth since, of course, everyone wants to know.
I had a chance to speak with the CEO of TSA, Kari Luther Rosbeck. Her own daughter passed away from SID syndrome, and being a part of this organization was a way for her to commemorate her daughter’s life. Kari has worked on Comedy for Cure since its inception eleven years ago. In addition, she shared that there are 37 TSA fundraising walks across the country as well as a NYC event called Art for a Cure, which will exhibit art created by people of all ages who suffer from TSA. Kari also shared how in the late 1990’s researchers determined the two genes that cause TSA and found the genetic pathway. Now there is effective treatment for some of the side effects of the disease, such as infantile spasms, which affects 40 percent of babies born with TSC. The babies can go on to have hundreds of these spasms a day and if you don’t stop their spasms, it can lead to a lifetime of issues. Kari also informed us that one-third of children born with TSC have parents who have the disorder. A child has a 50 percent chance of inheriting the disorder if a parent has it. There is no known cause of the disorder in two-thirds of the cases because the gene can spontaneously mutate.
Beth Lewin Dean, Vice President of Epilepsy at Lundbeck was also honored at the dinner. Lundbeck is a company that has the first FDA approved treatment for TSC, one does of which can stop the infantile spasms. Dean was instrumental in being part of a dedicated team that overcame numerous obstacles to ultimately win FDA approval.
The Tuberous Sclerosis Alliance was founded in 1974 by parents of children with TSC who saw the need to educate the public and the medical community about the disorder. Today, the TS Alliance is able to provide its constituents with the most up-to-date information about the disorder while awarding grants for research that will eventually result in a cure. Of the 6,000 diagnosed rare diseases, only 200 have approved treatment. So the TS Alliance has served the community as a catalyst: first, in aiding the discovery of the tuberous sclerosis complex (TSC) genes, second, in doing the same for research on the genetic pathway, and third, in bringing together the research community for conferences that have led to the initial clinical trials taking place today.
In eleven years Comedy for a Cure has raised over three million dollars. The money from this event and their other fundraisers
helps further research, provides community support programs (educational meetings), awards grants for research that will eventually result in a cure and employs a full time advocate who works with the families, school systems, and survivors on transitioning into adulthood.
To see how you can help, or for more information about the TS Alliance or TSC click here.