An Evening of Progress and Promise

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Joy and Chris Dinsdale, Honorary Chairs

Laura Marks and Jonathan Goldstein, Event Co-Chairs

Congratulations to the Gala Honorees!

David and Penney Parkes 
Courage in Leadership Award presented in recognition of their three decades of unwavering service to the TSC community, including providing leadership on our Board of Directors, offering peer support, guiding strategic planning and marketing initiatives, volunteering for every major NYC event and ensuring everyone affected by TSC has access to care and treatment.  David and Penney have devoted much of their lives to ensuring everyone with TSC, including their son Eric, have the best possible outcomes. They have both been crucial to the TSC Alliance’s focus on transition resources and housing options for semi-dependent adults with TSC.

Ramesh and Kalpana Bhatia Family Foundation
The TSC Champion Award honors the Ramesh and Kalpana Bhatia Family Foundation, recognizing their leadership around TSC-Associated Neuropsychiatric Disorders (TAND), an unmet need within the TSC community.  The Bhatia Family Foundation launched Anya's Accelerator, aimed at catalyzing the development of biomarkers to inform clinical care and development of interventions for autism and other impactful aspects of TAND.  Their work has galvanized a global community of researchers to come together in support of greater progress.

Nobelpharma America
The TSC Champion Award is presented 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. Nobelpharma America’s mission is to contribute to society by developing critical but neglected pharmaceuticals and medical devices. Their mantra, “When in doubt, the patient’s benefit takes priority,” is evident in their approach to overcoming challenges throughout the product development process.

The PREVeNT Trial Core Team (Drs. Martina Bebin, Jurriaan Peters, Brenda Porter, Darcy Krueger, Sarah O'Kelley, Hope Northrup, Mustafa Sahin, Gary Cutter) 
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. The PREVeNT Trial results suggested that rapid diagnosis of TSC in infants, prior to the onset of seizures, followed by close and frequent neurologic follow-up including serial EEGs, aids in early detection of those infants at risk for seizures. The initiation of vigabatrin at the onset of epileptiform activity on the EEG does delay and decrease the overall prevalence of infantile spasms.  The frequent neurologic follow-up in the first year for a TSC infant improved the likelihood of early detection of both focal seizures and infantile spasms, which is critical for ensuring the best developmental outcome possible. This team of researchers designed a cutting-edge clinical trial that will serve as the foundation for future studies focusing on preventative treatment in TSC.

Derek Bauer, MD
Promise in Research Award in recognition of his work as an adult neurologist specializing in TSC care, serving as a member of the Reproductive/Perinatal Health Initiative’s Core Group, Chair of the Outreach Committee and on our Board of Directors. Dr. Bauer uses his experience as an adult living with TSC to enhance the TSC Alliance’s outreach and educational efforts focused on the adult population.  His expertise is also crucial for our global relationships.