July 2022

7/1/22
Washington University Tuberous Sclerosis Center Welcomes New Director of the Adult TSC Clinic

The Washington University Tuberous Sclerosis Center is excited to announce that Dr. Fabio Nascimento will serve as the new director of the Adult TSC Clinic at Washington University.  Dr. Nascimento is an adult neurologist and epileptologist who received specialized clinical and research training in TSC at Massachusetts General Hospital. He will be responsible for evaluating and coordinating multidisciplinary care for adult TSC patients and helping transition former pediatric TSC patients into adult care.


February 2022

2/28/22
Washington University Tuberous Sclerosis Center Joins mTOR Inhibitor Epilepsy Prevention Trial (TSC-STEPS)

The Washington University Tuberous Sclerosis Center is participating in the FDA-sponsored, multicenter trial, Stopping TSC Onset and Progression 2B: Sirolimus TSC Epilepsy Prevention Study (TSC-STEPS).  The purpose of this placeo-controlled clinical drug trial is to determine whether early treatment with the mTOR inhibitor sirolimus in infants prior to the onset of seizures can prevent the development of epilepsy and neurodevelopmental deficits in TSC.  For more information, call Olga Novak, clinical research coordinator at 314-454-6120, or see the Clinical Trials.gov website.


July 2020

7/31/20
Epidiolex Receives FDA Approval for Epilepsy in Tuberous Sclerosis Complex Patients

The United States Food and Drug Administration (FDA) approved Epidiolex for treatment of seizures in people with tuberous sclerosis complex. Epidiolex is a drug formulation of the plant-derived cannabinoid, cannabidiol (CBD). The Washington University Tuberous Sclerosis Center participated in the critical Phase 3 placebo-controlled trial demonstrating efficacy of Epidiolex for epilepsy in TSC patients and leading to its FDA approval.


September 2019

9/14/19
St. Louis Cardinals Baseball Game Fundraiser for Tuberous Sclerosis

Join the Washington University Tuberous Sclerosis Center at the St. Louis Cardinals game on Saturday September 14 to help support the “Cure for Cauy” fundraiser, with proceeds benefiting the Tuberous Sclerosis Alliance. More information at: http://www.cureforcauy.com/.


June 2019

6/22/19
2019 International Tuberous Sclerosis Research Conference

The 2019 International Tuberous Sclerosis Research Conference will occur on 6/20/19 – 6/22/19 in Toronto, Canada.  This multidisciplinary conference will feature the latest in both clinical and basic research in TSC. Dr. Michael Wong, director of the Washington University Tuberous Sclerosis Center, will serve as one of the co-chairs of the organizing committee for this meeting. More details about this meeting can be found here.


June 2019

6/15/19
Joint TS and LAM Regional Conference

The Washington University Tuberous Sclerosis Center will host a regional conference with the TS Alliance and LAM Foundation at the Farrell Learning and Teaching Center at Washington University from 9:30 am to 4:30 pm on Saturday June 15. This free one-day conference will feature local leading researchers and clinicians specializing in tuberous sclerosis complex (TSC) and lymphangioleiomyomatosis (LAM), as well as speakers from The ARC, Child Neurology Foundation and MassMutual discussing transition issues. The conference will offer a Pediatric Track (Track 1), a Transition Track (Track 2) and an Adult Track with sessions important to adults with LAM and TSC (Track 3).  Additional information and registration at https://www.tsalliance.org/news/join-us-at-a-2019-educational-conference/


October 2018

10/13/2018
Step Forward to Cure TSC St. Louis

Join the TS Alliance of St. Louis and Southern Illinois for the annual Step Forward to Cure TSC to be held at Jackson City Park, at Jackson, MO at 12:00 pm on Saturday October 13. For more information, please contact:
Donna Bullard
 at dbullard@jackson.k12.mo.us


August, 2018

8/1/2018
Washington University Tuberous Sclerosis Center of Missouri welcomes new TSC clinician and researcher.

The Washington University Tuberous Sclerosis Center of Missouri is excited to announce that Laura Jansen, MD, PhD, joined the Center in August 2018.  Dr. Jansen is a pediatric neurologist and former director of the TSC Clinic at University of Virginia and has extensive experience with basic research in TSC, focusing on neurological manifestations of the disorder. She will be active in performing both patient care and research in the Center and becoming Co-Director of the TSC Clinic.


June, 2018

6/1/2018
Washington University Tuberous Sclerosis Center of Missouri named a TSC Center of Excellence

The Washington University Tuberous Sclerosis Center of Missouri has been officially recognized by the Tuberous Sclerosis Alliance as a TSC Center of Excellence, one of just several such centers in the United States.  In addition to meeting standard core criteria for an official TSC clinic, the special Center of Excellence status denotes meeting additional gold standards for clinical care, education, partnership, and clinical and basic research in TSC.


May, 2018

5/8/2018
Washington University Tuberous Sclerosis Center to Join the PREVeNT Trial

The Washington University Tuberous Sclerosis Center of Missouri has finalized plans to serve as a site for the ground-breaking PREVeNT trial (Preventing Epilepsy using Vigabatrin in Infants with Tuberous Sclerosis Complex), a multicenter clinical drug study aimed at testing a preventative treatment for cognitive delays and epilepsy in infants diagnosed with TSC prior to the onset of seizures. For more information, please contact: Olga Novak at 314-454-6120 or go to our clinical drug trial site.


April, 2018

4/10/2018
FDA Approves Use of Everolimus for Treatment of Epilepsy in TSC

The FDA announced approval of everolimus (Afinitor) for treatment of drug-resistant focal seizures in TSC patients. This represents a significant therapeutic advance for TSC and is the first drug of its kind (mTOR inhibitor) to be approved for any type of epilepsy. The Washington University Tuberous Sclerosis Center of Missouri contributed significantly to this advance in performing critical preclinical research and participating in the pivotal clinical trial, EXIST3, leading to FDA approval.


September, 2017

9/23/2017
Step Forward to Cure TSC – St. Louis, MO

Join the TS Alliance of St. Louis and Southern Illinois for the annual Step Forward to Cure TSC to be held at Cliff Cave Park in St. Louis, MO at 1:30 pm on Saturday September 23. For more information, please contact:
Ashley Fasciola
 at ashleyfasciola@wustl.edu


July, 2017

7/31/2017
Missouri State Legislature Renews Funding for the Washington University Tuberous Sclerosis Center!

The Missouri State Legislature, led by State Treasurer Eric Schmitt, dedicated $250,000 for continued support and expansion of the comprehensive Washington University Tuberous Sclerosis Center of Missouri.


June, 2017

6/1/2017
Washington University Tuberous Sclerosis Clinic Joins the Tuberous Sclerosis Alliance Biosample Repository Study

The Washington University Tuberous Sclerosis Clinic will now be one of several TSC clinics in the United States participating in the Tuberous Sclerosis Alliance Biosample Respository Study.  Blood, saliva, and other tissue samples are being collected from TSC patients for use in research. For more information, please contact:
Ashley Fasciola
 at 314-454-6120 or go to our clinical research site.


March, 2017

3/9/2017
TS Alliance Reception: An Update from the Washington University Tuberous Sclerosis Center!

Thursday, March 9, 6:00 – 8:00 p.m.
Third Degree Glass Factory
5200 Delmar Avenue
St. Louis, MO 63108
Join us for this exciting event as we highlight new advances in tuberous sclerosis complex and activities of the Washington University Tuberous Sclerosis Center of Missouri and honor our special guest, Missouri State Treasurer Eric Schmitt. Guest speakers include Kari Luther Rosbeck, Dr. Michael Wong, and Eric Schmitt.
Hors d’oeuvres/light dinner will be provided. Please RSVP to Gwen Montaigne at Tawanda1951@yahoo.com.


February, 2017

2/1/2017
Washington University Tuberous Sclerosis Clinic Participating in Cannabidiol Clinical Drug Trial for Epilepsy in Tuberous Sclerosis Patients

The Washington University Tuberous Sclerosis Clinic is now enrolling patients in an industry sponsored randomized, double-blind, placebo-controlled drug trial testing cannabidiol for intractable seizures in tuberous sclerosis patients. For more information, please contact:
Olga Novak
 at 314-454-6120 or go to our clinical drug trial site.


September, 2016

9/10/2016
Step Forward to Cure TSC – St. Louis, MO

Join the TS Alliance of St. Louis and Southern Illinois for the annual Step Forward to Cure TSC to be held at Cliff Cave Park in St. Louis, MO at 1:30 pm on Saturday September 10. For more information, please contact:
Gwen Montaigne
at tawanda1951@yahoo.com.


July, 2016

7/31/2016
Missouri State Legislature Renews Funding for the Washington University Tuberous Sclerosis Center!

The Missouri State Legislature, led by Senator Eric Schmitt, dedicated $1.25 million in the 2016-2017 state budget, of which $250,000 has currently been released, for continued support and expansion of the comprehensive Washington University Tuberous Sclerosis Center of Missouri.


May, 2016

5/18/2016
Washington University Tuberous Sclerosis Clinic to Start Seeing Adult Patients of all Ages

The Washington University Tuberous Sclerosis Clinic is pleased to announce the expansion of services for adults with TSC.  While previously the Clinic was limited to children and young adults up to age 21 years, the Clinic will now see TSC patients of all ages. The primary clinic, directed by Dr. Michael Wong, is based in St. Louis Children’s Hospital, where initial evaluation and screening occurs. Depending on the needs of each patient, referrals will then be made to a team of aligned adult TSC sub-specialists within Washington University, or ongoing consultation and collaboration of the TS Clinic can be established with the patient’s primary care doctor or other local specialists for long-term care.


November, 2015

11/10/2015
TS Alliance Reception Celebrating Missouri State Funding for the Washington University Tuberous Sclerosis Center!

Tuesday, November 10, 6:30 – 8:00 p.m.
Washington University
Farrell Learning & Teaching Center
Second Floor Atrium
520 S. Euclid Ave
St. Louis, MO 63110
Join us for this exciting event as we announce the new state-funded Washington University Tuberous Sclerosis Center of Missouri. Guest speakers include Kari Luther Rosbeck, Dr. Michael Wong, and our honored guest, Missouri State Senator Eric Schmitt.
Hors d’oeuvres and refreshments will be provided. Please RSVP to John Wendling by Tuesday, November 3 at jwendling300@gmail.com.


October, 2015

10/24/2015
Town Hall Meeting – St. Louis, MO 

Join the TS Alliance of St. Louis and Southern Illinois from 1 to 3 pm for a Town Hall Meeting at Washington University in St. Louis. Dr. Michael Wong will present “Clinical Research and Infantile Spasms: A Community Call to Action.”
RSVP to John Wendling at jwendling300@gmail.com or
314-546-8627.

10/17/2015
Step Forward to Cure TSC – St. Louis, MO

Join the TS Alliance of St. Louis and Southern Illinois for the annual Step Forward to Cure TSC to be held at Cliff Cave Park in St. Louis, MO. If you would like to be involved in the planning and organizing or volunteer on walk day, please contact
Gwen Montaigne
at tawanda1951@yahoo.com.


July, 2015

7/25/2015
St. Louis Cardinal’s TSC Fundraiser

The Washington University Tuberous Sclerosis Center of Missouri participated in the 6th Annual “Cure for Cauy” fundraiser, organized by Suzanne, Robert, and Cauy Clarke in conjunction with the St. Louis Cardinals and benefiting the Tuberous Sclerosis Alliance.  Over 60 physicians, nurses, and staff affiliated with the Washington University Tuberous Sclerosis Clinic and their families attended the fundraiser and watched the Cardinals beat the Atlanta Braves 1-0.

7/15/2015
Washington University Tuberous Sclerosis Clinic Joins the Tuberous Sclerosis Alliance Natural History Database Study

The Washington University Tuberous Sclerosis Clinic will now be one of approximately 20 TSC clinics in the United States participating in the Tuberous Sclerosis Alliance Natural History Database Study.  This study will follow over 2000 patients with TSC, which will facilitate research on the natural history and treatment of TSC. For more information, please contact:
Ashley Fasciola
 at 314-454-6120 or go to our clinical research site.

7/1/2015
TSC Funding from the Missouri Department of Mental Health

Missouri State Senators Eric Schmitt and Kurt Schaefer helped pass the state’s Department of Mental Health bill, including $250,000 toward the Washington University Tuberous Sclerosis Center of Missouri to promote its three-fold mission of basic science research, clinical research, and comprehensive patient care for TSC.