SILVER SPRING, Md., Oct. 18, 2024 - On Friday, October 25, the TSC Alliance® will hold its 50th Anniversary Gala, An Evening of Progress and Promise at Cipriani 42nd Street in New York City. The event will raise funds to further tuberous sclerosis complex (TSC) research and expand support programs for individuals and families affected by the disease.
Formed in 1974 by four mothers in Southern California, the TSC Alliance has since grown into an internationally recognized non-profit organization that does everything it takes to improve the lives of people with TSC. It drives research, increases care quality, improves access, inspires hope and advocates with and for everyone affected by the disease. TSC affects 50,000 in the United States and 1 million worldwide.
"We are incredibly excited about the 50th Anniversary Gala, because it allows us to celebrate five decades of incredible progress in the fight against TSC and also provides a special opportunity for the TSC Alliance to take a thoughtful look forward to a future full of promise for those we serve," said Kari Luther Rosbeck, President & CEO. "From the very beginning, the TSC community has always been the heartbeat and lifeblood of our organization, and this event and our special commemorative program book will pay homage to those who've worked relentlessly over 50 years to create a future where everyone with the disease can live their fullest lives."
During the gala, David and Penney Parkes will receive a Courage in Leadership Award for their three decades of unwavering service to the TSC community, while the Ramesh and Kalpana Bhatia Family Foundation will be honored with the TSC Champion Award to recognize their leadership around TSC-Associated Neuropsychiatric Disorders (TAND), an unmet need within the TSC community. Nobelpharma America will be recognized with a TSC Champion Award in recognition for their efforts—even during a global pandemic—to gain FDA approval of the first topical treatment for facial angiofibroma associated with TSC.
In addition, the PREVeNT Trial Core Team (Drs. Martina Bebin, Jurriaan Peters, Brenda Porter, Darcy Krueger, Sarah O'Kelley, Hope Northrup, Mustafa Sahin, Gary Cutter) will be honored with the Progress in Research Award for their advancement in clinical research by implementing the first preventative clinical trial for epilepsy in the United States aimed to prevent or delay seizures in infants with TSC. Finally, Derek Bauer, MD, will receive the Promise in Research Award to recognize his work as an adult neurologist specializing in TSC care.
The gala is supported by Presenting Sponsors Dr. Bonnie and Jonathan Rothberg & Family and Gold Sponsors including the Ramesh and Kalpana Bhatia Foundation, Jazz Pharmaceuticals, Marinus Pharmaceuticals and Nobelpharma America.
About tuberous sclerosis complex
Tuberous sclerosis complex (TSC) is a rare genetic disease that causes tumors to grow in different organs and can impair their function, primarily the brain, heart, kidneys, skin, eyes and lungs. Changes in the brain caused by TSC have the biggest impact on quality of life—from seizures and developmental delays to intellectual disabilities, behavioral challenges and autism. In fact, TSC is the leading genetic cause of epilepsy, including infantile spasms. A strong correlation also exists between TSC and autism—an estimated 40-50% of individuals with TSC have autism spectrum disorder.
About the TSC Alliance
The TSC Alliance improves quality of life for everyone affected by tuberous sclerosis complex by catalyzing new treatments, driving research toward a cure and expanding access to lifelong support. For more information, visit tscalliance.org.
Contact
Jaye Isham
Chief Outreach Officer
TSC Alliance
(301) 562-9890
jisham@tscalliance.org
SOURCE TSC Alliance
