TSC Matters Archive

Participate in a Caregiver Survey!

Global Perspectives, specialists in recruiting caregivers and patients for scientific studies, are currently looking for caregivers of individuals living with tuberous sclerosis complex (TSC). The purpose of this study is

Participate in the Observer Reported Toileting Abilities Survey (ORTAS) Validation Study!

Participate in the Observer Reported Toileting Abilities Survey (ORTAS) Validati...

Join the WINGS Study!

Are you a parent of a child with a genetic syndrome facing challenging behaviors...

Reproductive and Perinatal Health Initiative – Participate in the survey here

The TSC Alliance has launched a Reproductive and Perinatal Health Initiative com...

TSC-STEPS Trial

TSC-STEPS is a study to learn more about a drug known as Sirolimus and determin...

TSC Alliance support resources when going back to school

As we enter back-to-school season, we want to remind you about the support and r...

Host Step Forward to Cure TSC in your city in 2025!

Are you interested in hosting Step Forward to Cure TSC in your city in 2...

Back to school support resources

As we approach back to school season, we want to remind you about the sup...

Meet the 2024 Team TSC NYC Marathon runners!

The TSC Alliance is thrilled to have six Team TSC athletes participatin...

Steven Sparagana Legacy Fund

Dr. Steven Sparagana’s dedication and pioneering work have been instrumental i...

Sleep Study in TSC

Aims of the study The main aim of this study is to document current sleep...

Ongoing Early Intervention and Autism trials

See below for ongoing trials....

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

50th Anniversary Spotlight: Susan McBrine

Susan McBrine is one of the four founding moms of the National Tuberous Sclerosi...

Rainbow Study (Remote Assessment an Intervention for Behavior Problems in Kids with TSC)

The Remote Assessment and Intervention for Behavior Problems in Kids With TSC (R...

Ongoing Sleep Studies

See below for ongoing trials....

Understanding caregiver experiences of sleep management difficulties in individuals with tuberous sclerosis complex

Email m.shabetai@bham.ac.uk to participate in this study....

Caregiver Experience Survey for Individuals with TSC

Global Perspectives, specialists in recruiting caregivers and patients for scien...

Basimglurant, a new mechanism of action for control of seizures in tuberous sclerosis complex?

Do you or your loved one suffer from epileptic seizures? Noema Pharma is develop...

TSC and Emotion Dysregulation Study for Children 8 to 18 years old and Their Caregivers

What A study to learn more about the effectiveness of a Tuberous Sclerosis Compl...

Nominate a TSC researcher or clinician for the Manuel R. Gomez Award

The TSC Alliance is now accepting nominations for the 2023 Manuel R. Gomez Award...

April 2023 Message from the CEO

TSC Alliance President & CEO Kari Luther Rosbeck announces registration open...

Register today for the 2023 Regional TSC & LAM Conference Series

The TSC Alliance® and The LAM Foundation have joined together once again to co-...

Basimglurant, a new mechanism of action for control of seizures in tuberous sclerosis complex?

Do you or your loved one suffer from epileptic seizures? Noema Pharma is develop...

Congratulations to our Volunteers of the Year

Earlier this year, as part of our Volunteer Leadership Summit, the TSC Alliance...

Current Clinical Trials

See below for ongoing clinical trials. For a full list of clinical trials go to ...

Ongoing Biosample Studies

See below for ongoing studies....

Alzheimer’s in TSC study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1...

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infectio...

Listen to the latest episode of TSC Now

Check out the newest episode of TSC Now, where host Dan Klein speaks with Justin...

TSC-STEPS trial

TSC-STEPS is a study to learn more about a drug known as Sirolimus and determine...

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

Bcureful’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Pr...

Anya’s Accelerator TAND Biomarker Workshop

With support from the The Ramesh and Kalpana Bhatia Family Foundation, the TSC ...

11th Annual TSC Global Awareness Day Scheduled for May 15

On May 15, the TSC Alliance® will join tuberous sclerosis complex (TSC) orga...

#March4TSCresearch update

Thank you to all our volunteers for your efforts advocating for Tuberous Sclero...

Watch our recent webinar on SUDEP

...

TSC MRI Study

Why are we doing this study? Researchers at Johns Hopkins are seeking participan...

Join us for an upcoming Adult Topic Call

Are you an independent or semi-independent adult with TSC? If so, please join us...

TSC MRI Study

Why are we doing this study? Researchers at Johns Hopkins are seeking participan...

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

Alzheimer’s in TSC Study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1...

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infectio...

Baby Talk in TSC

Why are we doing this study? Our team is investigating how TSC impacts a baby’...

Introducing FaceForwardwithTSC.com: An Exciting New Resource for Facial Angiofibroma

Nobelpharma America is proud to announce the launch of FaceForwardwithTSC.com. T...

Watch the 2022 World TSC Conference Videos

All 2022 World TSC Conference videos are now available. By accessing these vide...

We Need Your Input!

In 2023, the TSC Alliance will update our five-year strategic plan, so we are la...

Participate in the TSC Self-Report Portal – New Survey Available

The TSC Alliance has created a Self-Report Portal (SRP) to collect information c...

Participants Needed for a Study Using AI to Predict the Onset of Seizures

Do you or your loved one suffer from uncontrolled epileptic seizures? Using Arti...

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

Alzheimer’s in TSC Study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1...

Ongoing Epilepsy Trial

See below for the upcoming trial....

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infectio...

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

Alzheimer’s in TSC Study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1...

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infectio...

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’...

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infectio...

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infectio...

Message from the CEO – April 2022

TSC Alliance® President and CEO Kari Luther Rosbeck, along with Director of Com...

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infectio...

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infectio...

Ongoing Epilepsy Trial

See below for the upcoming trial....

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infectio...

Thank You Future Leaders Class of 2020-2021

The six young adults in the Future Leaders Class of 2020-2021 greatly exceeded t...

TSC Researcher Spotlight – Katarzyna “Kasia” Klonowska

Katarzyna “Kasia” Klonowska, PhD, is a 2020 recipient of the TSC Alliance® ...

Ongoing Genetic Study

See below for the ongoing study....

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trial

See below for the ongoing trial....

August Volunteer Opportunities

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Ongoing Epilepsy Trial

See below for the upcoming trial....

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infectio...

TSC Researcher Spotlight – Felix Chan, PhD

The Developmental Synaptopathies Consortium (DSC) is composed of a group of medi...

Ongoing Genetic Study

See below for the ongoing study....

Ongoing Quality of Life Study for Adults with TSC

See below for ongoing study....

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trial

See below for the ongoing trial....

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infectio...

June Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Ongoing Quality of Life Study for Adults with TSC

See below for ongoing study....

Ongoing Genetic Study

See below for the ongoing study....

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trial

See below for the ongoing trial....

Ongoing Epilepsy Trial

See below for the upcoming trial....

April 2021 Note from the President & CEO

TSC Alliance President and CEO Kari Luther Rosbeck provides organizational updat...

Congratulations to Our 2020 Volunteers of the Year!

On Friday, March 5 the TSC Alliance hosted our annual Volunteer Appreciating Cel...

April Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infectio...

Ongoing Genetic Study

See below for the ongoing study....

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trial

See below for the ongoing trial....

Ongoing Epilepsy Trial

See below for the upcoming trial....

February Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Curing the Epilepsies Conference Summary

The National Institute of Neurological Disorders and Stroke (NINDS) has sponsore...

February Note from the CEO

...

In Memory Of Ken Johnson

The TSC Alliance and Endowment Fund Board of Directors recently established the ...

CARING through COVID Survey

For many families of children/adults with genetic syndromes associated with deve...

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/...

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infectio...

December TSC Now Episode

In the December episode of TSC Now, a podcast by the TSC Alliance, Kelly Knupp, ...

December Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Volunteer Spotlight: Carly Kaye, Community Alliance Chair for Michigan

In addition to her role as Community Alliance Chair for Michigan, Carly Kaye is ...

Ongoing Genetic Study

See below for the ongoing study....

Ongoing Biosample Studies

See below for ongoing studies....

Save the Date for the 2021 Virtual March on Capitol Hill

If you are interested in participating in the Virtual March on Capitol Hill, ple...

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Progra...

Currently Recruiting Sibling Participants

Do you have a brother or sister with autism? Share your voice. Spread more aware...

Global clinical study evaluating topical rapamycin treatment for facial angiofibroma in patients with tuberous sclerosis complex

This study of a new cream for the treatment of mild to moderate facial angiofibr...

Meet Some of the TSC Alliance Research Grant Recipients

New research grants awarded by the TSC Alliance in 2020:...

Re-Watch All of the Virtual TSC & LAM Conference Sessions

Did you miss our three virtual conferences earlier this year? Catch up on all th...

Join Our Future Leaders for a Young Adults with TSC Webinar

Are you a Young Adult with TSC (age 17-25)? Then join us next week for a webinar...

Join Us for Baking for a TSC Cure

Saturday, December 12, 2020 • 6:00 pm ET Chef Rivera, Head Pastry Chef at Bac...

Welcome from Nobelpharma America!

Nobelpharma America is the first global subsidiary of Nobelpharma Co. Ltd (“No...

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/...

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance is reaching out to individuals with TSC who had COVID-19 infect...

December Note from the CEO

In the last edition of TSC Matters back in October, I refle...

Global clinical study evaluating topical rapamycin treatment for facial angiofibroma in patients with tuberous sclerosis complex

This study of a new cream for the treatment of mild to moderate facial angiofibr...

Join Us For the Final Virtual TSC & LAM Conference on November 7!

The third and final Virtual TSC and LAM Conference on Saturday, November 7, 202...

Participate in a Worldwide Survey on Access to TSC Medications

Tuberous Sclerosis Complex International (TSCi) invites you to participate in a ...

October Note from the CEO

This year has challenged us to come up with new ways to bri...

Participate in the TSC Biosample Repository Project

To better understand why people are impacted so differently by this disorder and...

Ongoing Biosample Studies

See below for ongoing studies....

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance is reaching out to individuals with TSC who had COVID-19 infect...

October Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Ongoing Genetic Study

See below for the ongoing study....

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/...

Join Us for an Upcoming Adult Topic Call

Are you an independent or semi-independent adult with TSC? If so, please join us...

Quality of Life Study – Checklist for adults with TSC (CHAT-TSC)

Are you an adult with TSC or a parent/caregiver of a dependent adult with TSC? A...

Ongoing Genetic Study

See below for the ongoing study....

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trials

See below for ongoing trials....

Epilepsy Trial

Adjunctive Ganaxolone Treatment (Part A) in TSC Followed by Long-term Treatment ...

August Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance is reaching out to individuals with TSC who had COVID-19 infect...

Transition of Epilepsy Care Questionnaire

Open to adults or caregivers of a child or dependent adult with TSC and seizures...

Tuberous Sclerosis Research Opportunity

Please help us better understand factors that impact the decision to unde...

Quality of Life Study – Checklist for adults with TSC (CHAT-TSC)

Are you an adult with TSC or a parent/caregiver of a dependent adult with TSC? A...

Epilepsy Trial

Adjunctive Ganaxolone Treatment (Part A) in TSC Followed by Long-term Treatment ...

Behavioral Research – Open to families with children with and without TSC

Tell us about your child’s emotional outbursts...

Ongoing Genetic Studies

See below for ongoing studies....

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trials

See below for ongoing trials....

June Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

April Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Tuberous Sclerosis Research Opportunity

Please help us better understand factors that impact the decision to undergo epi...

Behavioral Research – Open to families with children with and without TSC

Tell us about your child’s emotional outbursts...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trials

See below for ongoing trials....

Listen and Subscribe to TSC Now

TSC Now is the TSC Alliance’s podcast series, which features interviews wit...

#March4TSCresearch Update

The annual TSC Alliance March on Capitol Hill to advocate for federal funding fo...

Moving TSC Research Forward in the Face of COVID-19

On Monday, April 6, TSC Alliance staff members from our science department prese...

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/...

Update on TSC Biosample Repository and Natural History Database Project

Although collections are paused due to COVID-19 concerns, the TSC Alliance is ab...

TSC Alliance COVID-19 & TSC Resource

The TSC Alliance has assembled a wide range of information and resources about t...

April Note from the President & CEO

It is crazy to think that six short weeks ago we were wrapp...

February Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Tuberous Sclerosis Research Opportunity

Please help us better understand factors that impact the decision to undergo epi...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Ongoing Biosample Studies

See below for ongoing studies....

Ongoing Facial Angiofibroma Trials

See below for ongoing trials....

Ongoing Epilepsy Trials

See below for ongoing trials....

FDA Approves Sabril Label Expansion For Patients 2 To 10 Years Old

On January 24, the TSC Alliance learned the US Food and Drug Administration (FD...

Listen and Subscribe to TSC Now

TSC Now is the TSC Alliance’s podcast series, which features interviews wit...

#March4TSCresearch Update

On March 4, 2020 more than 120 volunteer advocates from across the country will ...

Seeking Volunteers for the TSC Biosample Repository

To learn more about donating to the TSC Biosample Repository click here or con...

February Global Alliance Update

Last week, TSC Alliance Director of Government & Global Affairs Katie Smith...

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/...

TSC Alliance Announces New Improving Partnerships and Lives Grant

The TSC Alliance Improving Partnerships and Improving Lives Grant (IPaLG) is des...

February Note from the President and CEO

Following what was a truly inspiring 45th anniversary year,...

Are you an Adult with TSC or a Caregiver of an Adult with TSC?

Dr. Agnies Van Eeghen and her research team at Erasmus Medical Centre in The Net...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

SPARK for Autism Research Study, Boston Children’s Hospital

Boston Children’s Hospital would like to invite individuals of all ages diagno...

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are look...

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest an...

Researcher Seeking Donation of Tissue Samples from Your Surgery

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular...

Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC)

A new clinical trial for individuals with TSC and facial angiofibromas who are 6...

Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Tuberous Sclerosis Research Opportunity – Please Help Us Better Understand Factors That Impact the Decision to Undergo Epilepsy Surgery

We have a brief survey (20 minutes) addressing caregiver satisfaction with epile...

Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Description: UCB Biosciences, Inc. is conducting a clinical trial to evaluate th...

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epil...

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Progra...

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment still open! Where: TSC Clinical Research Consortium sites at Boston C...

45th Anniversary Flashback: The 2010s

Throughout 2019, the TSC Alliance will celebrate our sapphire, 45th anniversary....

December Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Submit your Nominations for our 2019 Volunteer Awards!

The TSC Alliance will honor up to four individuals, one Community Alliance and o...

We are Seeking Volunteers for the TSC Biosample Repository

The purpose of this research project is to collect a sample of blood, tissue, fl...

Important Information About Changes to Access and Availability of Generic Everolimus and Afinitor®

As of December 13, 2019, important information is available regarding changes to...

Upcoming Adult Topic Calls

Are you an independent or semi-independent adult with TSC? If so, please join us...

Upcoming Community Events

Chicago Post-Holiday Party Sunday, January 12, 2020, 5 to 7:30 pm Alexian Brothe...

Join Us for a Free Webinar on TSC-Associated Neuropsychiatric Disorders (TAND)

TAND Webinar: Effective Behavioral Treatments Presented by Dr. Nathan Call...

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/...

Listen and Subscribe to TSC Now

TSC Now is the TSC Alliance’s podcast series, which features interviews wit...

December Note from the President & CEO

As I reflect on 2019 one theme that runs through most of what we accomplished is...

Changes to TSC Matters in 2020

The TSC Alliance is transitioning to a new email platform in 2020. Be on the loo...

SPARK for Autism Research Study, Boston Children’s Hospital

Boston Children’s Hospital would like to invite individuals of all ages diagno...

45th Anniversary Flashback: The 2000s

Throughout 2019, the TSC Alliance will celebrate our sapphire, 45th anniversary....

Meet Team TSC

On Sunday, November 3, 2019, 11 members of Team TSC will be running in the 2019...

Are you an adult with TSC or a caregiver of an adult with TSC?

Dr. Agnies Van Eeghen and her research team at Erasmus Medical Centre in The Net...

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are look...

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest an...

Researcher Seeking Donation of Tissue Samples from Your Surgery

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular...

Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC

A new clinical trial for individuals with TSC and facial angiofibromas who are 6...

Tuberous Sclerosis Research Opportunity – Please Help Us Better Understand Factors That Impact the Decision to Undergo Epilepsy Surgery

We have a brief survey (20 minutes) addressing caregiver satisfaction with epile...

Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Description: UCB Biosciences, Inc. is conducting a clinical trial to evaluate th...

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epil...

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Progra...

Update on State Funding in Maryland and Missouri

The Missouri State Legislature appropriated $250,000 in the state’s 2020 b...

Upcoming Community Events

TSC Family Fun Day at Pullen Park Sunday, October 20, 2019 Pullen Park; Carouse...

Join Us for a Free Webinar on SUDEP

Sudden Unexpected Death in Epilepsy (SUDEP) Presented by Douglas Smith, MD Minne...

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment still open! Where: TSC Clinical Research Consortium sites at Boston C...

October Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Grant Opportunities for Families Impacted by Infantile Spasms

Our friends at the Child Neurology Foundation, in partnership with the Harnett ...

TSC Alliance Announces New TSC Centers of Excellence

The TSC Alliance is pleased to introduce our new “TSC Center of Excellence” ...

Join Us at the Regional TSC & LAM Conference in Los Angeles!

The fifth and final Regional TSC and LAM Conference, co-hosted with The LAM Foun...

Upcoming Step Forward to Cure TSC Walks

Sometimes simple things can make a huge difference. Like simple steps, taken by ...

TSC Research: Our Vision for 2020

As part of our 45th Anniversary Celebration, during the Fund a Cure portion of t...

Subscribe to TSC Now

TSC Now is the TSC Alliance’s podcast series, which features interviews wit...

What TSC Means to Me Drawing Contest

In September, the TSC Alliance of Indiana held a “What Tuberous Sclerosis ...

Upcoming Adult Topic Calls

Are you an independent or semi-independent adult with TSC? If so, please join us...

October Note from the President & CEO

On Thursday, October 3 the TSC Alliance celebrated our 45th Anniversary Gala at ...

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epil...

2019 International TSC Research Conference Review

The 2019 International TSC Research Conference: Changing the Course of TSC, co...

Upcoming Adult Topic Calls

Are you an independent or semi-independent adult with TSC? If so, please join us...

Upcoming Community Events

Northern California Picnic Saturday, August 25, 2019, 11 AM – 2 PM Contact: L...

Become a Junior Leader!

We are looking for Junior Leaders for the 2019-2020 school year. The TSC Allianc...

Join the TSC Alliance at Our 45th Anniversary Gala in New York City

Early bird tickets available until September 9, 2019. Learn More Get Your Ticke...

Join Us at the Regional TSC & LAM Conference in Chicago!

The third Regional TSC and LAM Conference, co-hosted with The LAM Foundation, is...

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/...

Listen to TSC Now

TSC Now is the TSC Alliance’s podcast series, which features interviews wit...

Join Team TSC and Run the NYC Marathon!

There are still a few spots left to run with Team TSC in the 2019 TCS New York C...

45th Anniversary Flashback: The 1990s

Throughout 2019, the TSC Alliance will celebrate our sapphire, 45th anniversary....

Upcoming Step Forward to Cure TSC Walks

Sometimes simple things can make a huge difference. Like simple steps, taken by ...

August Note from the President & CEO

From July 22-26 TSC Alliance staff members from across the country came together...

August Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are look...

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

What is the purpose of this program? NORD’s Tuberous Sclerosis Complex Travel ...

Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC)

A new clinical trial for individuals with TSC and facial angiofibromas who are 6...

Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment goal might be reached by Sept 2019...

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

What is the purpose of this program? NORD’s Tuberous Sclerosis Complex Travel ...

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

SPARK for Autism Research Study, Boston Children’s Hospital

Boston Children’s Hospital would like to invite individuals of all ages diagno...

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are look...

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest an...

Researcher Seeking Donation of Tissue Samples from Your Surgery

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular...

Clinical Trial for individuals diagnosed with Tuberous Sclerosis Complex (TSC) and cutaneous angiofibromas

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Description: UCB Biosciences, Inc. is conducting a clinical trial to evaluate th...

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epil...

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment goal might be reached by Sept 2019...

TSC Clinical Research Consortium Update

To initiate and implement clinical studies more quickly and effectively, researc...

45th Anniversary Flashback: The 1980s

Throughout 2019, the TSC Alliance will celebrate our sapphire, 45th anniversary....

Join Team TSC and Run the NYC Marathon!

Team TSC is a dedicated group of people running on behalf of the 50,000 people i...

June Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Get Your Tickets Now to Our 45th Anniversary Celebration in NYC

On Thursday, October 3, 2019, the Tuberous Sclerosis Alliance (TS Allianc...

Upcoming Community Events

Upper Midwest Picnic (Minneapolis, MN) Sunday, June 23, 2019, 11 AM Contact: Al...

2019 Global TSC Awareness Day Celebration Held at Foothill Oaks Elementary School in Sacramento, CA

Jessica Hilderbrand, Resource Specialist, held an event to celebrate one of her ...

#March4TSCresearch Update

We are excited to report over a third of the Senate signed the FY20 Dear Colleag...

Subscribe to TSC Now

TSC Now is the TSC Alliance’s podcast series, which features interviews with...

Join Us for an Upcoming TAND Webinar

TAND Webinar: Trauma 101 for Parents of Medically Complex Kids Presented by Caro...

Upcoming Step Forward to Cure TSC Walks

Sometimes simple things can make a huge difference. Like simple steps, taken by ...

St. Louis Regional TSC & LAM Conference

The TSC Alliance and The LAM Foundation are co-hosting four more Regional T...

June Note from the President & CEO

On May 15, the TSC Alliance joined TSC International (TSCi) to observe the seven...

International TAND Research Project Awarded Funding

Congratulations to Drs. Petrus de Vries (University of Cape Town) and Anna Janse...

April Note from the President & CEO

We’re so excited to bring you the first issue of TSC Matters, our new bimonthl...

TAND Parent/Caregiver Survey: We Need Your Input!

As part of our TSC-Associated Neuropsychiatric Disorders (TAND) Initiative we...

IEP Season is Approaching

If you need support in understanding your rights as a parent/caregiver of a chil...

Congratulations Dr. Martina Bebin!

Congratulations to Dr. Martina Bebin, former TSC Alliance Board Member and TSC C...

#March4TSCresearch Update

Thanks to the incredible advocacy of our volunteers, over half of the House sign...

Comedy for a Cure 2019

On Sunday, April 7, 2019, the 18th Annual Comedy for a Cure® will be held at A...

Bid Now in Our Exclusive Comedy for a Cure Silent Auction!

The TSC Alliance’s 18th Annual Comedy for a Cure happens this Sunday, April 7...

Boston Regional TSC & LAM Conference

The TSC Alliance and The LAM Foundation are co-hosting five Regional TSC ...

Upcoming Step Forward to Cure TSC Walks

“And that is how change happens. One gesture. One person. One moment at a time...

Upcoming Adult Topic Calls

Are you an independent or semi-independent adult with TSC? If so, please join us...

TSC Preclinical Consortium Meeting

The TSC Alliance launched the TSC Preclinical Consortium in 2016, in collabora...

Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas (Valid through June 2019)

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

SPARK for Autism Research Study, Boston Children’s Hospital (Valid through March 2020)

Boston Children’s Hospital would like to invite individuals of all ages diagno...

Researcher Seeking Donation of Tissue Samples from Your Surgery (Valid through June 2020)

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular...

Phenotypic Variability in Tuberous Sclerosis Complex (TSC) (Study Valid through September 1, 2021)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest an...

2018 Volunteers of the Year

On Thursday, March 7, 2019 the TSC Alliance held its annual Volunteer Appreciati...

April Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

45th Anniversary Flashback: The 1970s

Throughout 2019, the TSC Alliance will celebrate our sapphire, 45th anniversary....