TSC Matters Post
Join Us for a Free Webinar on TSC-Associated Neuropsychiatric Disorders (TAND)
TAND Webinar: Effective Behavioral Treatments Presented by Dr. Nathan Call
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Episode 6: TSC-Associated Neuropsychiatric Disorders (TAND)
In episode 6 of TSCnow, host Dan Klein talks to Petrus de Vries, MBChB, MRCPsych, PhD, Sue Struengmann Professor of Child and Adolescent Psychiatry at the University of Capetown in
TSC Research Matters Post
A Lifetime Dedicated to TSC Care and Research
For more than four decades, Dr. Michael Frost and his wife, Janie, have watched the tuberous sclerosis complex (TSC) community grow from a handful of determined families into a global network of
TSC Research Matters Post
Anita Bhatia Foundation for Tomorrow Renews Commitment to TSC and TAND Research
The Anita Bhatia Foundation for Tomorrow marks the next chapter in a philanthropic journey built on years of impact through the Ramesh and Kalpana Bhatia Family Foundation. Grounded in a legacy of
TSC Research Matters Post
Finding the Answers to Improve TAND Outcomes
Agnies van Eeghen, MD, PhD, says caring for individuals with tuberous sclerosis complex (TSC) is both heart-warming and intellectually stimulating. She loves the complexity of the disease, as it addresses
TSC Research Matters Post
Navigating the Diagnostic Journey: What Families Face After a Tuberous Sclerosis Complex Diagnosis
When a child is diagnosed with tuberous sclerosis complex (TSC)—a genetic disorder that can affect multiple organs and cause seizures, developmental delays, and autism—families suddenly find themselves navigating a complex
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Regulating Together Webinar Recording 1/15/26
Emotion dysregulation is a common challenge for individuals with tuberous sclerosis complex (TSC) and TSC-Associated Neuropsychiatric Disorders (TAND). This webinar will introduce the Regulating Together program, including its goals and structure. Then the
TSC Research Matters Post
2025 TSC International Research Conference: Forging new discoveries
The 2025 TSC International Research Conference: Engage, Accelerate, Transform was held at the Bethesda North Marriott Hotel & Conference Center in North Bethesda, MD June 26-28, 2025. The conference, hosted
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Join us for the 2025 TSC Regional Conference Series!
These one-day TSC Regional Conferences aimed at individuals with tuberous sclerosis complex (TSC) and their caregivers will feature leading local researchers and clinicians specializing in TSC. The series is presented
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Anya’s Accelerator
We are so grateful for the work and progress the TSC Alliance has made over the past 20 years. Anya’s Accelerator will provide an opportunity to advance TAND research and
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Tune in for the 2025 Transition Webinar Series!
The 2025 TSC Transition Webinar Series will provide parents, caregivers and adults with tuberous sclerosis complex (TSC) with recommendations and resources that provide timelines and supports available, so they know how and when to
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How to participate in behavior and TAND research (2024 webinar)
The TSC Alliance hosted a webinar on May 13, 2024 about two studies on understanding and treating TSC-associated neuropsychiatric disorders (TAND), with a specific focus on behavior problems in children
Story of Hope
Brynleigh Shillinger
Brynleigh was diagnosed with tuberous sclerosis complex (TSC) at 9 1/2 months when she began having complex partial seizures. After an EEG, brain MRI, cardiac scans, an abdominal ultrasound, skin
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Fund research
50 Forward Fund The last 50 years have been transformative. The TSC Alliance has funded more than $39 million in TSC research and through these investments have significantly expanded our
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Honor a loved one
Tributes Tribute gifts can be made in honor or in memory of individuals. It is a wonderful way to send a birthday or anniversary wish, or congratulations for retirement, a
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Board of Directors
Cathy Evanochko, Chair Cathy Evanochko is one of the founding board members of the organization. In the days prior to the availability of the Internet, an article about Cathy’s family
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Research Strategy
The TSC Alliance draws physicians, researchers, industry partners, and the TSC community into the research process, and thus they are uniquely positioned to help drastically alter the course of this
FAQ
Surveillance & management recommendations for TSC
For the Newly Diagnosed or Suspected TSC For Individuals Already Diagnosed with TSC Genetics Obtain three-generation family history to assess for additional family members at risk of TSC. Offer genetic
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Spotlight on TSC Alliance
2024 marks the 50th anniversary of the TSC Alliance®! Throughout the year, we’ll celebrate five decades of progress as well as look forward with much promise for the future. Join
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Brain & neurological function
Multiple manifestations can occur in the brain of someone with TSC. Click on an item listed below to learn more: Brain abnormalities Epilepsy/seizure disorders In addition to these physical challenges,
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Surveillance & treatment
The following table provides guidelines to help you and your loved one manage the treatment of TSC. Additional information for your physician is available here. Surveillance & management recommendations for TSC
Story of Hope
Max Lucca Bertolotti
Diagnosed with TSC at two weeks old, Max is currently in the 8th grade. He has TSC1 and was born with multiple tubers in his brain, a SEGA brain tumor,
TSC Matters Post
Anya’s Accelerator TAND Biomarker Workshop
With support from the The Ramesh and Kalpana Bhatia Family Foundation, the TSC Alliance hosted the first Anya’s Accelerator TAND Biomarker Workshop April 26-27, 2023 in Silver Spring, MD.
TSC Alert
Tuberous Sclerosis Complex Research Program Funding Opportunities for Fiscal Year 2023
The FY23 Defense Appropriations Act is anticipated to provide funding for the TSCRP to support innovative, high-impact tuberous sclerosis complex (TSC) research. The managing agent for the anticipated funding opportunities
TSC Alert
TSCRP Anticipated Funding Opportunities for Fiscal Year 2023
The FY23 Defense Appropriations Act is anticipated to provide funding for the TSCRP to support innovative, high-impact tuberous sclerosis complex (TSC) research. The managing agent for the anticipated funding opportunities
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Episode 38: Galvanizing a World TSC Community
In a special two-part episode of TSC Now, host Dan Klein recaps the 2022 World TSC Conference, which was held in Dallas, Texas July 28-31, 2022. In part one Dan
TSC Alert
TANDem Seed Grant Funding Available from UK Tuberous Sclerosis Association
This year, together with the TAND consortium, The Tuberous Sclerosis Association in the UK is running their first ever TAND-centered funding round. The remit of this call is to offer
TSC Alert
DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2021 grant cycle.
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Episode 24: Achieving Universal Health Coverage and Driving Innovative Research Through Global Collaboration
It’s the two-year anniversary of TSC Now and we’re celebrating with a new name, the TSC Alliance! If you missed our announcement on May 16, the Tuberous Sclerosis Alliance has
TSC Alert
DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2021 grant cycle.
TSC Alert
DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2021 grant cycle.
TSC Matters Post
October Note from the CEO
This year has challenged us to come up with new ways to bring our community together, to empower those living with TSC and their loved ones and
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Episode 15: Managing Behaviors During COVID-19 (Part 2) + A New Partnership with SeizureTracker
In episode 15 of TSC Now, host Dan Klein continues exploring how to manage harmful and disruptive behaviors associated with TSC-associated neuropsychiatric disorders (TAND) during the ongoing COVID-19 pandemic. Then
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Episode 14: Managing Aggressive and Harmful Behaviors During COVID-19 (Part 1)
In episode 14 of TSC Now, host Dan Klein begins the first of an important two-part discussion focused on how parents can begin to address aggressive and harmful behaviors associated
TSC Matters Post
Listen and Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
TSC Alert
DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2020 grant cycle.
TSC Matters Post
Listen and Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
TSC Matters Post
February Global Alliance Update
Last week, TSC Alliance Director of Government & Global Affairs Katie Smith, along with TSC Clinic Director Darcy Krueger, MD, PhD of Cincinnati Children’s Hospital and TAND Unit Director Tanjala T. Gipson, MD
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Episode 9: The State of the TS Alliance
In episode 9 of TSC Now, host Dan Klein talks to Tuberous Sclerosis Alliance President and Chief Executive Officer Kari Luther Rosbeck. They discuss her favorite memories from the organization’s
TSC Matters Post
Listen and Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
TSC Matters Post
TSC Research: Our Vision for 2020
As part of our 45th Anniversary Celebration, during the Fund a Cure portion of the live auction we raised funds to support two important research initiatives that we believe will
TSC Matters Post
Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
TSC Matters Post
Listen to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
Resource
Episode 3: The 2019 International TSC Research Conference
In the third episode of TSC Now, host Dan Klein, Director of Digital Platforms for the Tuberous Sclerosis Alliance, talks to the two co-chairs of the 2019 International TSC Research Conference: Changing
TSC Alert
Deadline Extended: DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2019 grant cycle.
TSC Matters Post
Get Your Tickets Now to Our 45th Anniversary Celebration in NYC
On Thursday, October 3, 2019, the Tuberous Sclerosis Alliance (TS Alliance) will mark our sapphire anniversary, celebrating 45 Years of Changing the Future through Inspiration, Innovation and Hope,during an intimate 45th Anniversary Gala at the Edison Ballroom in New York City.
TSC Matters Post
Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders
TSC Alert
Deadline Extended: DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2019 grant cycle.
TSC Alert
April TSC Preclinical Consortium Meeting
On April 1 members of the Tuberous Sclerosis Complex (TSC) Preclinical Consortium met in Silver Spring, Maryland to discuss ongoing preclinical projects and set priorities for the rest of the year.
TSC Alert
Deadline Extended: DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2019 grant cycle.
TSC Alert
Deadline Extended: DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2019 grant cycle.
TSC Matters Post
TSC Preclinical Consortium Meeting
The TSC Alliance launched the TSC Preclinical Consortium in 2016, in collaboration with industry and academia, to test the efficacy of candidate therapeutic drugs and advance the best to the clinical stage.
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E-Newsletter and Podcast Series
TSC Matters is a bimonthly community e-newsletter from the TSC Alliance highlighting TSC research updates, TSC clinical trials, upcoming TSC Alliance events and more. Click below to read and subscribe
TSC Alert
DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2019 grant cycle.
TSC Alert
Grant Opportunity for TAND Research
In collaboration with the Fund Doctor & Mrs Charles Tournay-Dubuisson, the King Baudouin Foundation invites researchers worldwide to submit proposals related to TSC-Associated Neuropsychiatric Disorders (TAND). Up to €600,000 of
TSC Matters Post
Ongoing Early Intervention and Autism trials
See below for ongoing trials.