New $500K Investment Targets a Hidden Burden of Tuberous Sclerosis

SILVER SPRING, Md. – March 27, 2026 – The TSC Alliance® has announced a significant multi-year investment that promises to accelerate research into one of the most challenging aspects of tuberous sclerosis complex (TSC). A three-year, $500,000 commitment from the Anita Bhatia Foundation for Tomorrow will target the development of new clinical care strategies and research for TSC-Associated Neuropsychiatric Disorders (TAND), a complex array of cognitive, behavioral, and psychiatric conditions that affect the vast majority of individuals with TSC.

This new funding will bolster two critical initiatives: the upcoming 2026 International TSC Clinical Consensus Conference, where global care standards are set, and Anya's Accelerator, a research program focused on developing tangible tools for patients and clinicians. The partnership signifies a renewed push to address what many in the community describe as the greatest unmet need for those living with the rare genetic disorder.

The Invisible Weight of TAND

Tuberous Sclerosis Complex is a genetic disorder that causes benign tumors to grow in vital organs, including the brain, kidneys, heart, and skin, affecting an estimated two million people worldwide. While the physical manifestations of TSC are well-documented, the condition carries a heavier, often invisible, burden: TSC-Associated Neuropsychiatric Disorders, or TAND.

Affecting nearly 90% of individuals with TSC at some point in their lives, TAND is not a single symptom but a vast spectrum of challenges. These can range from behavioral issues like severe aggression and sleep difficulties to psychiatric diagnoses such as Autism Spectrum Disorder (ASD), which affects 40-50% of the TSC population, and Attention Deficit Hyperactivity Disorder (ADHD). The disorders also encompass intellectual disabilities, academic struggles, and neuropsychological deficits in memory and executive function.

For families, TAND often represents the most difficult aspect of the disease, profoundly impacting quality of life. "TAND continues to be one of the greatest unmet needs in the TSC community, having an outsized impact on quality of life for both the person with the disease and their loved ones," said Kari Luther Rosbeck, President and CEO of the TSC Alliance. The daily struggles associated with TAND can overshadow the management of the disease's physical tumors, creating immense stress for caregivers and impeding educational and social development for patients.

A Push Towards Precision Medicine and Early Detection

The investment from the Anita Bhatia Foundation for Tomorrow is strategically aimed at transforming the diagnostic and treatment landscape for TAND. A central challenge has been the lack of objective tools to identify and measure these neuropsychiatric symptoms.

"We don't know who will experience TAND and how those manifestations will progress in severity, and current screening methods for comorbidities like autism can be delayed, missing the opportunity for early intervention," explained Dean Aguiar, TSC Alliance Senior Vice President, Translational Research.

This is where the funding will make its most significant scientific impact. A key goal is to develop and validate a blood-based biomarker panel. These biomarkers—biological signposts in the blood—could provide the first objective, data-driven method to diagnose TAND, predict its progression, and measure a patient's response to therapy. This would represent a monumental leap from current reliance on subjective behavioral assessments.

Furthermore, the funding will support the establishment of a "Core Outcome Measure Set," a standardized toolkit for clinicians to assess TAND manifestations consistently. This standardization is crucial for improving the rigor of clinical trials and ensuring that new therapies are evaluated against a common, universally accepted benchmark. The initiative, primarily driven through Anya's Accelerator, is a clear move towards precision medicine, where treatments can be tailored to an individual's specific biological profile.

A Legacy of Focused, Personal Philanthropy

The partnership is reinforced by a deep, personal commitment from the Anita Bhatia Foundation for Tomorrow. The foundation's work builds upon nearly two decades of philanthropy from the Ramesh and Kalpana Bhatia Family Foundation, whose focus on TSC was galvanized by the diagnosis of their own daughter, Anya.

In 2022, the family foundation made a foundational $2.5 million gift—the largest in the TSC Alliance's history at the time—to create Anya's Accelerator. The program was specifically designed to fast-track the development of biomarkers and interventions for autism and other TAND-related challenges. This new $500,000 investment represents a continuation of that focused, long-term vision.

"Through our continued support of Anya's Accelerator and the TSC Alliance, the Anita Bhatia Foundation for Tomorrow is investing in what TSC families need most: answers grounded in truth, science, and data," stated Anita Bhatia, Executive Director of the AB Foundation for Tomorrow. "This investment reflects our commitment to accelerating discovery, strengthening hope, and ensuring that every family affected by TSC has access to knowledge, treatments, and a future shaped by scientific evidence—not fear."

This model of sustained, strategic philanthropy highlights the powerful role such partnerships can play in driving progress for rare diseases, where research funding can be scarce.

Shaping the Future of Global Care

Beyond the laboratory, the investment will have a direct impact on clinical practice around the world by supporting the 2026 International TSC Clinical Consensus Conference. This recurring event brings together the world's leading TSC experts to review the latest evidence and update the official guidelines for diagnosis, surveillance, and management of the disease.

These consensus recommendations serve as the global standard of care, guiding doctors from specialized clinics to community hospitals. By funding this conference, the Anita Bhatia Foundation for Tomorrow is helping to ensure that the latest breakthroughs in understanding TAND are integrated into clinical practice more rapidly. The development of new TAND-specific guidelines will empower clinicians to screen for, diagnose, and treat these neuropsychiatric issues with greater confidence and efficacy.

"The development of tools to better measure TAND symptoms–diagnosis, progression and response to therapy–can lead to quicker detection and ultimately improved outcomes," Aguiar added, emphasizing the direct line from research to patient benefit. This comprehensive approach—combining foundational science, philanthropic vision, and clinical guideline development—offers a powerful beacon of hope for a community long searching for answers to its most complex challenges.