UT Tuberous Sclerosis Center of Excellence

The UT Tuberous Sclerosis Center of Excellence encompasses comprehensive care and research for pediatric and adult patients with TSC

In 2006, Dr. Hope Northrup founded the University of Texas (UT) Tuberous Sclerosis Complex (TSC) Center of Excellence, one of just 20 clinics in the country devoted to the treatment of TSC and research to improve care of affected individuals. Dr. Northrup co-directs the center with Dr. Mary Kay Koenig who joined Dr. Northrup in the summer of 2007. Dr. Northrup is a Medical Geneticist and Dr. Koeni

g is a Neurologist, each providing complementary skills essential to the Center's success. In August 2007, Dr. Northrup received funding from the TSC Alliance to begin participating in the TSC Natural History Database Project. This database serves as a resource of information to researchers from all over the world who are seeking information regarding how TSC affects a person at different times in their life. A total of 1455 individuals have been enrolled nationally with 75 of those patients enrolled through the UT TSC Center. The availability of healthcare professionals with expertise and dedicated knowledge regarding the current guidelines for surveillance and management of TSC is critical to the care of an individual with this disease. As the largest state in the continental United States and the 2nd most populous, Texas has roughly 5000 residents living with TSC. The UT Tuberous Sclerosis Complex Center of Excellence is the only TSC clinic in Texas offering comprehensive care to both pediatric and adult patients. Our center has a dedicated team of 19 physicians, each with the expertise to recognize and treat these complicated patients. Our multidisciplinary team includes specialists in both pediatric and adult medicine including: genetics, neurology, neurosurgery, neuropsychology, epilepsy, dermatology, nephrology, cardiology, ophthalmology, endocrinology, gastroenterology, plastic surgery, pulmonology, and interventional radiology. We also have a full-time nursing coordinator. The Center is a collaborative effort between Children's Memorial Hermann Hospital, Memorial Hermann Hospital, and The University of Texas Medical School at Houston. Our partnership with Memorial Hermann offers our patients state of the art testing facilities and world-renowned inpatient care. This collaboration, along with our dedicated team of physicians and staff, is the driving force making our center a success. The UT TSC Center of Excellence clinic is located in the UT Professional Building and is held twice a month. All physicians are housed in this clinic and, for the convenience of patients and their families, every effort is make to coordinate appointments among physicians in the center.

10/02/2024

Please consider attending this Topic Call hosted by the TSC Alliance!

Join us for our October Ask an Advocate session. This month's session will feature an open forum with Shelly and Elizabeth where you can ask about Evaluations, Individualized Education Programs (IEPs) or 504 plans, and more!

We look forward to seeing you on Monday, October 14 at 8 pm ET.

Register here: https://ow.ly/Kckx50TyXeU

09/19/2024

A fantastic webinar by our very own, Dr. Sarah Lund Wilson! We are so lucky to work alongside her and her passionate for TSC 😀

Join us for a clinical study webinar!

Join Sarah Lund Wilson, MD, Assistant Professor, Division of Child and Adolescent Neurology, McGovern Medical School at the University of Texas Health Science Center at Houston, as she shares information on the importance of TSC-Associated Neuropsychiatric Disorders (TAND) research with a focus on the EPICOM Study: Looking Beyond Seizure Control.

⏰ The webinar will take place on Thursday, September 26, 2024, at 8 pm ET.

The EPICOM Study is a clinical study for children and adults with tuberous sclerosis complex (TSC), evaluating the changes in behavioral and neuropsychiatric symptoms when an investigational drug is taken as an add-on therapy for individuals with TSC who experience seizures.

Learn more about the EPICOM Study at epicomstudy.com

Register for the webinar here: https://ow.ly/9IRh50Tqngw

Photos from UT Tuberous Sclerosis Center of Excellence's post

08/01/2024

If you are a caregiver for a child with TSC, please consider registering for FREE caregiver course through Child Neurology Foundation!

Register here: https://www.childneurologyfoundation.org/cnf-learning-portal/

07/19/2024

TSC Parents - if your child is 3-6 years old, consider participating in this study!

05/16/2024

TSC Fundraiser with Tiff's Treats!! From 5/15-5/29, the TSC Alliance gets 20% of all sales using the code COOKIE4TSC!

08/29/2023

It's that time of year again! We'd love to see you out at our 12th Annual TSC Golf Tournament on Friday, October 20th, 2023 at Quail Valley Golf Course. If interested, please complete the form below and return to us!

02/28/2023

We love our rare disease family! Check out our story of our very own TSC warrior, Nora!

11/30/2022

December 1-7 is awareness week. Infantile spasms are often overlooked or misdiagnosed. Educate yourself on the signs and symptoms at www.infantilespasms.org and join the conversation by using