Resources Archive

TSC Transition Webinar – Transition of medical care from the pediatric to adult health system

Ask an Advocate Session – 2/10/25

This session featured TSC Alliance Education Peer Mentor Deanna Wall, MHA, Clini...

50th Anniversary Gala Commemorative Program Book

An introduction to tuberous sclerosis complex

Una introducción al complejo de esclerosis tuberosa (CET)

TSC Diagnostic Criteria, Surveillance and Management Guidelines

Navigating the early years of TSC (in utero to 5 years of age)

Navigating the school age years of TSC (6 to 13 years of age)

Navigating the transition years of TSC (14 to 26 years of age)

Navigating the adult years of TSC

A place of hope

Un lugar de esperanza

A basic introduction to clinical trials

Una introducción básica a los ensayos clínicos

Child Neurology Foundation Transition Of Care Toolkit

Sample letter to a family member

Telling your family members about TSC can be difficult and overwhelming. Let us ...

In their own words: personal journeys with tuberous sclerosis complex (2007)

Reproductive decision making and TSC

Checklist for successful appointments and prescription management

Medical specialists you may encounter

Medication and testing

Emergency medicine checklist

New Diagnosis Flowchart (Childhood)

Overcoming hurdles: insurance, scripts and specialty pharmacy

Shared decision-making and children with disabilities: pathways to consensus

Sample prior authorization letter for AMLs

Sample Prior Authorization Letter for SEGAs

Sample letter of medical necessity for Epidiolex

DiRx Postcard

Nobelpharma Connect Brochure

Infantile or epileptic spasms and tuberous sclerosis complex

Los espasmos infantiles o epilépticos y el complejo de esclerosis tuberosa

Racial differences in the dermatological manifestations of TSC infographic

TSC-Associated Neuropsychatric Disorders (TAND) and Education

Signs and symptoms of caregiver burnout

Finding you caregiver zone

How to help me worksheet

Aging caregiver checklist

Acute care decision sheet

Steps to reduce SUDEP

Advance decision-making planning sheet

ABCs of respite: a consumer guide for family caregivers

Tuberous Sclerosis Complex Bcureful TSC Clinic Travel Assistance Program

TSC Bcureful Research Study Participation Travel Assistance Program

TSC Natural History Database and Biosample Repository

Brain/tissue donation and SUPEP awareness

TSC Navigator and Navigation Guides

Vigabatrin-associated field loss (VAVFL): what you need to know

Pérdida del campo visual relacionada con Vigabatrin (VAVFL, por sus siglas en inglés): lo que usted debe saber

Questions to ask about canine assistance

Signs of infantile spasms

Los signos de espasmos infantiles

November 2024 Adult Topic Call – Kidney Issues in TSC

2024 TS Canada ST Educational Series – Diagnosing TSC and understanding its cause (Recording)

For those who were unable to join us for the first session of the Canadian TSC E...

2024 TS Canada ST Educational Series – What is routine follow-up in TSC? (Recording)

For those who were unable to join us for the second session of the Canadian TSC ...

2024 TS Canada ST Educational Series – Management of epilepsy associated with TSC (Recording)

For those who were unable to join us for the third session of the Canadian TSC E...

2024 TS Canada ST Educational Series – Introduction to TAND (Recording)

If you missed the last 2024 Canadian TSC Educational Series session, Introductio...

EPICOM Study: Looking Beyond Seizure Control Webinar

How to participate in behavior and TAND research (2024 webinar)

The TSC Alliance hosted a webinar on May 13, 2024 about two studies on understan...

2023 TS Canada & TSC Alliance Research Collaboration Webinar

Did you miss the TSC Canada ST & TSC Alliance Research Collaboration Webinar...

Baby Talk in TSC study (2023 Webinar Series)

Tanjala Gipson, MD, Director of the TSC-Associated Neuropsychiatric Disorders Cl...

PREVeNT trial outcomes and where do we go from here? (2023 Webinar Series)

Caring for a loved one with facial angiofibroma associated with TSC (2023 Webinar Series)

Facial angiofibroma is one of the most visible signs of tuberous sclerosis compl...

ABCs and 1,2,3s of preparing for back to school (2023 Webinar Series)

Shelly Meitzler, Director, Outreach & Support, and Elizabeth Skufca, Communi...

RAINBOW Study (2023 Webinar Series)

This webinar discusses behaviors in TSC and the Remote Assessment and Interventi...

Sudden unexpected death in epilepsy (SUDEP) awareness and grief support (2023 Webinar Series)

Presented by: Peter Crino, MD, PhD, TSC Clinic Director at the University of Mar...

TrustTSC study: enrolling children and adults with TSC-associated seizures (2023 Webinar Series)

Racial differences in TSC skin manifestations (2023 Webinar Series)

Global Collaborations (TANDem) and Updated Consensus Guidelines (2022 World TSC Conference)

TSC Community Driven Research Network (TSC Alliance Research Model) (2022 World TSC Conference)

Driving the future of TSC – clinical trials and clinical care (2022 World TSC Conference)

2022 World TSC Conference General Q&A: Panel of Day 1 Presenters

2022 World TSC Conference General Q&A: panel of day 2 presenters

Seizure types and treatments (2022 World TSC Conference)

Skin and dental manifestations and treatment options (2022 World TSC Conference)

Genetics made simple (2022 World TSC Conference)

Kidney tumors, cysts & treatment options (2022 World TSC Conference)

Access to TSC clinical care (2022 World TSC Conference)

Gene therapy – hopes and hurdles (2022 World TSC Conference)

TAND – behavioral interventions and overview of medications (2022 World TSC Conference)

Navigating the complexities for special needs care in TSC (2022 World TSC Conference)

Surgical approaches and assessments for epilepsy and SEGA (2022 World TSC Conference)

Accessing early childhood services and non-medical therapies (2022 World TSC Conference)

TAND – ADHD, anxiety, autism (research) (2022 World TSC Conference)

Genetics, reproductive issues and impact on relationships (2022 World TSC Conference)

Finding your way home – creative housing options / microboards (2022 World TSC Conference)

Other organ manifestations – liver, pancreas, heart and eyes (2022 World TSC Conference)

Using technology to your advantage (2022 World TSC Conference)

Accessing managed and palliative care throughout your TSC journey (2022 World TSC Conference)

LAM, treatment options and clinical trials (2022 World TSC Conference)

Caregiver resources – self and respite care (2022 World TSC Conference)

Refractory epilepsy – now what? (2022 World TSC Conference)

Managing progressive kidney disease (2022 World TSC Conference)

Transition into adulthood – employment and higher education (2022 World TSC Conference)

The TrustTSC Phase 3 clinical trial for seizures in children and adults with TSC (2022 Research Education Webinar Series)

What is facial angiofibroma associated with TSC and how can it be managed? (2022 Research Education Webinar Series)

mTOR inhibitors: past, present & future (2022 Research Education Webinar Series)

Basimglurant: potential new mode of action for seizures in TSC (2022 Research Education Webinar Series)

Refractory epilepsy in adults with TSC (2021 E-Webinar Series)

Refractory epilepsy: children and surgery (2021 E-Webinar Series)

Tumor growth – kidneys, liver and pancreas (2021 E-Webinar Series)

Understanding the TSC genes – TSC genetics made simple (2021 E-Webinar Series)

LAM in TSC: surveillance, treatment and research (2021 E-Webinar Series)

Genetics and pregnancy in tuberous sclerosis complex (2021 E-Webinar Series)

Dermatologic manifestations of TSC (2021 E-Webinar Series)

Overcoming hurdles: insurance, scripts and specialty pharmacy (2021 E-Webinar Series)

Assisted living, assisted employment and day programs (2021 E-Webinar Series)

College, housing and employment (2021 E-Webinar Series)

Guardianship options, financial planning and government benefits (2021 E-Webinar Series)

Navigating the transition to adult care (2021 E-Webinar Series)

Building the transition individualized education program (IEP) (2021 E-Webinar Series)

Introduction to transition to adult services and overview of Child Neurology Foundation transition toolkit (2021 E-Webinar Series)

TAND – adult-specific issues: anxiety, anger and depression (2021 E-Webinar Series)

TAND: medication options (2021 E-Webinar Series)

TAND: sleep (2021 E-Webinar Series)

TAND: research update (2021 E-Webinar Series)

TAND: aggressive behavior and management (2021 E-Webinar Series)

TAND: early intervention (2021 E-Webinar Series)

Managing treatment and TAND specialists (2021 E-Webinar Series)

TAND: ADHD/OCD (2021 E-Webinar Series)

TSC Alliance self-report portal and the TAND-SQ (2021 E-Webinar Series)

Cannabidiol oral solution as an add on therapy in infants with seizures caused by TSC (2021 E-Webinar Series)

Timber Pharmaceuticals: research update & roundtable discussion on treatment of facial angiofibromas (2021 E-Webinar Series)

Marinus, Ganaxolone and the TSC CALM study (2021 E-Webinar Series)

ABC to SAP: why your child needs a seizure action plan webinar

Changing the course of tuberous sclerosis complex to create a more hopeful future (May 2021)

Reunión para familias hispanohablantes

Drug-Resistant and Undertreated Epilepsy (sponsored by LivaNova)

In honor of National Epilepsy Awareness Month, TSC Now host Dan Klein is joined ...

50th Anniversary Spotlight – Shonnie Johnson

2024 marks the 50th anniversary of the TSC Alliance, which was founded by four m...

Episode 49: Community Spotlight – Gloria Triebenbach

In a final bonus episode in 2023, host Dan Klein connects with Gloria Triebenbac...

Episode 48: Community Spotlight – Kristen Moore

In a bonus episode, host Dan Klein connects with Kristen Moore, Vice Chair of th...

Episode 47: Closing the Epilepsy Treatment Gap Worldwide

In this episode, host Dan Klein learns about Pretola Global Health and Consultin...

Episode 46: Understanding drug resistant epilepsy and treatment options

In this episode of TSC Now, host Dan Klein interviews Karen Keough, MD, a child ...

Episode 45: The 2023 International TSC Research Conference

On this episode of TSC Now, host Dan Klein recaps the 2023 International TSC Res...

Episode 44: Rare Conversations

Disclaimer: This episode is sponsored by Nobelpharma America LLC. The opinions e...

Episode 43: The TSC-STEPS Trial

In this episode of TSC Now, host Dan Klein dives deep on a new clinical trial in...

Episode 42: Understanding Seizure Clusters

In the first episode of TSC Now in 2023, host Dan Klein recognizes International...

Episode 41: Help Today, Help Tomorrow

In the final episode of TSC Now in 2022, host Dan Klein connects with two incred...

Episode 40: Totally Super Cool!

In a special bonus episode of TSC Now, host Dan Klein learns about a new childre...

Episode 39: Inspiring a World TSC Community

In a special two-part episode of TSC Now, host Dan Klein recaps the 2022 World T...

Episode 38: Galvanizing a World TSC Community

In a special two-part episode of TSC Now, host Dan Klein recaps the 2022 World T...

Episode 37: The MILED Trial and the Future of LAM Research

In this episode of TSC Now, host Dan Klein celebrates Worldwide LAM Awareness Mo...

Episode 35: The Past, Present and Future of Autism Research in TSC

In this episode of TSC Now, host Dan Klein recognizes World Autism Month by taki...

Episode 34: Celebrating 20 Years of Comedy for a Cure

In this episode of TSC Now, host Dan Klein recognizes the 20th Anniversary Comed...

Episode 33: Noema, Basimglurant and a New Clinical Trial for Seizures in TSC

In a very special early episode of TSC Now, host Dan Klein recognizes Internat...

Episode 32: The 2022 World TSC Conference

In the first episode of TSC Now in 2022, host Dan Klein provides an overview of ...

Episode 31: The Present and Future of TSC & LAM Research

In the final episode of TSC Now in 2021, host Dan Klein recaps the 2021 Virtual ...

Episode 30: Infantile Spasms Awareness Week 2021

In Episode 30 of TSC Now, host Dan Klein kicks of Infantile Spams Awareness Week...

Episode 29: The TSC Navigator

In Episode 29 of TSC Now, host Dan Klein highlights TSC Navigator, an easy-to-us...

Episode 28: Comedy for a Cure® 2021!

In a very special episode of TSC Now, host Dan Klein provides a sneak peek of th...

Episode 27: Going Back to School and Caring for the Caregiver

In Episode 27 of TSC Now, host Dan Klein learns how parents can prepare for the ...

Episode 26: The Road to Newborn Screening in TSC

In Episode 26 of TSC Now, host Dan Klein takes a deep dive into one of the newer...

Episode 25: Lymphangioleiomyomatosis & Worldwide LAM Awareness Month (#WWLAM)

In Episode 25 of TSC Now, host Dan Klein recognizes Worldwide LAM Awareness Mont...

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 na...

Episode 23: Autism Spectrum Disorder in TSC and TACERN

In Episode 23 of TSC Now, host Dan Klein recognizes World Autism Month and Autis...

Episode 22: Overcoming Hurdles with Health Plans and Specialty Pharmacies

In Episode 22 of TSC Now, host Dan Klein explores overcoming hurdles in healthca...

Episode 20: The 2021 Virtual March on Capitol Hill

In the first episode of TSC Now, host Dan Klein dives deep on the upcoming Virtu...

Episode 19: Infantile Spasms Awareness Week (#ISAW2020)

In a very special early edition of TSC Now, host Dan Klein explores the topic of...

Episode 18: Understanding COVID-19’s Impact on Those with TSC & LAM

In episode 18 of TSC Now, host Dan Klein talks to Nishant Gupta, MD, Associate P...

Episode 17: Gene Therapy in TSC

In episode 17 of TSC Now, host Dan Klein talks to Xandra Breakefield, PhD, Profe...

Episode 16: COVID-19 and Back to School

In episode 16 of TSC Now, host Dan Klein talks to two of the TS Alliance’s Edu...

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 harmf...

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-pa...

Episode 13: TSC Global Awareness Month in the Age of COVID-19

In episode 13 of TSC Now, host Dan Klein celebrates TSC Awareness Month and one ...

Episode 12: Living with TSC During COVID-19

In episode 12 of TSC Now, host Dan Klein does a deep dive on the ongoing COVID-1...

Episode 11: A #March4TSCresearch Recap & Update on COVID-19

In episode 11 of TSC Now, host Dan Klein recaps our annual March on Capitol Hill...

Episode 9: The State of the TS Alliance

In episode 9 of TSC Now, host Dan Klein talks to Tuberous Sclerosis Alliance Pre...

Episode 7: Common Parent/Caregiver Challenges and Advocating for Your Health

In the seventh episode of TSC Now, host Dan Klein explores common challenges par...

Episode 6: TSC-Associated Neuropsychiatric Disorders (TAND)

In episode 6 of TSCnow, host Dan Klein talks to Petrus de Vries, MBChB, MRCPsych...

Episode 5: TSC Kidney Manifestations & Consensus Guidelines for Surveillance and Treatment

In episode 5 of TSC Now, Dan Klein talks to Dr. John Bissler, MD, Clinic Directo...

Episode 4: Educational Issues in TSC and How to Advocate for Your Child in School

In the fourth episode of TSC Now, host Dan Klein talks to Lilian Ansari, MS, Spe...

Episode 3: The 2019 International TSC Research Conference

In the third episode of TSC Now, host Dan Klein, Director of Digital Platforms f...

Episode 2: Epilepsy in TSC and Laser Ablation Surgery with Dr. Daniel Curry

In the second episode of TSC Now host Dan Klein talks to Dr. Daniel Curry, Direc...

Episode 1: TSC Global Day, 45th Anniversary and the Future of TSC Research

Welcome to the debut episode of TSC Now, a podcast from the Tuberous Sclerosis A...