Herscot Center for Tuberous Sclerosis Complex

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Herscot Center for Tuberous Sclerosis Complex

The Herscot Center for Tuberous Sclerosis Complex at the Massachusetts General Hospital offers comprehensive care for children and adults with TSC.

Tuberous sclerosis complex, or TSC, is a genetic disorder with a wide range of symptoms that can affect people from birth through adulthood. The disorder is caused by a mutation in one of two genes, TSC1 or TSC2. A mutation in either of these genes interferes with the body's ability to control cell growth and division. The disorder can occur sporadically as the result of a spontaneous mutation, or

it can be genetically inherited. TSC affects 1 in 6,000 people worldwide and impacts both sexes and all ethnicities equally. The disorder may cause tumor growth in multiple organ systems, including the brain, skin, eyes, heart, lung, and kidneys. However, TSC's effects vary greatly and are unpredictable from one individual to another, even within the same family. While some people with TSC are cognitively normal and experience minor organ involvement, others are more severely affected with multi-system progressive tumors, intractable epilepsy, and mental retardation. The neurological manifestations of TSC are often the most debilitating aspects of the disorder. Epilepsy is the most common medical condition associated with TSC. At least 60 percent, and possibly more than 90 percent, of people affected by TSC experience seizures at some point in their life. People with TSC may also develop learning disabilities, mental health and behavioral problems, such as attention deficit, depression, and autism.

07/08/2025

Exciting news! Dr. Thiele and Lauren Seeley Aguirre have spent the last several months writing a book called Epilepsy For Dummies. Barnes & Noble is running a 25% off campaign for members for all pre-orders, including this book. The sale goes through Friday, July 11th. If you would like to pre-order, use the code PREORDER25 at checkout.

Promotion Details:
25% OFF all pre-orders for Barnes & Noble Members
Premium Members get an ADDITIONAL 10% off print book pre-orders
Includes ALL formats: print books, eBooks, and audiobooks
Coupon code: PREORDER25
Anyone can join the free B&N Rewards program instantly with just an email address at barnesandnoble.com/membership

06/24/2025

We’re gearing up for the Sunflower Syndrome conference on Sat, July 26 - only 32 days away! Book your tickets now to gain insights from experts, hear the latest updates on the condition, and connect with other families.

Secure your spot: https://because.massgeneral.org/event/2025-sunflower-syndrome-family-symposium/e664277

06/13/2025

Join us on Sat, July 26 for an informative and inspiring day dedicated to Sunflower Syndrome. Gain insights from experts, connect with families, and learn about the latest research, treatment, and resources.

Secure your spot: https://because.massgeneral.org/event/2025-sunflower-syndrome-family-symposium/e664277

05/15/2025

Hi everyone, Happy TSC Awareness Day! We are thinking of all our patients and their families today. We advocate for TSC awareness today and everyday, and we hope you will too!

04/23/2025

The Epilepsy Foundation of New England is hosting a special conference for epilepsy caregivers: A Caregiver’s Journey from Resilience to Resources. Join them on Sunday, May 18th, from 9:00 AM-3:00 PM at the Crowne Plaza in Woburn. This event uplifts and empowers caregivers with practical tools, expert insights, and a supportive community to help navigate the challenges of caregiving with resilience. Attendees will also have the opportunity to participate in two breakout sessions focused on topics of their interest. Don’t miss this chance to connect, learn, and grow alongside others on the caregiving journey.

02/05/2025

Considering college and looking for guidance?

THRIVE is your chance to get advice from our experts on navigating college with epilepsy and connect with other college students embarking on this new life chapter. This program provides seniors and their parents with valuable insights, tips for managing epilepsy at university, and resources to help your child transition smoothly into this exciting new chapter.

From managing epilepsy and university to connecting with student accommodations, we're here to help you THRIVE in college 🎓.

For any inquiries or questions about THRIVE email: rbluestein@mgb.org.

02/03/2025

Join us on February 13 at 8 PM Eastern Time for the first session of the six-part Transitional Webinar series about transitioning to adulthood, presented in collaboration with the TSC Alliance! Elizabeth Thiele will kick off the series with Medical Transition Guidelines and Toolkit, which delves into the transition of medical care from the pediatric to the adult health system and how to use a transition toolkit. Don't miss this webinar to make the move from pediatric to adult care.

09/30/2024

The Carol & James Herscot Center for TSC is 5 days away from hosting our virtual conference about TAND (TSC Associated Neuropsychiatric Disorders) on Saturday, October 5th, from 1:00-3:00pm EST. Conference participants will hear our featured speaker: Dr. Robert Doyle, the Herscot Center's Psychiatrist, speak about TAND, along with other members of the Herscot Center who will discuss TAND and current MGH TAND research projects. A question and answer session will follow. We hope you will join us!

Click here to purchase a virtual ticket: https://because.massgeneral.org/event/2024-herscot-center-for-tsc-virtual-conference/e591960

09/23/2024

We're 12 days away from hosting our virtual TSC conference on TAND (TSC-Associated Neuropsychiatric Disorders). As part of our count down to Saturday, October 5, we are sharing another fact about TAND.

Did you know? TSC-Associated Neuropsychiatric Disorders (TAND) can have an impact on the quality of sleep that you get.

If you'd like to purchase a virtual ticket, please go to: https://because.massgeneral.org/event/2024-herscot-center-for-tsc-virtual-conference/e591960

09/16/2024

On Saturday, October 5, you will hear from the Carol & James Herscot Center for TSC clinical social worker, Leigh Horne-Mebel. Leigh often helps people cope with anxiety, depression, concerns about relationships, and concerns about decision making. She will be sharing information about TSC-Associated Neuropsychiatric Disorders (TAND) from the perspective of a social worker.

To purchase a virtual ticket, go to: https://because.massgeneral.org/event/2024-herscot-center-for-tsc-virtual-conference/e591960

09/09/2024

As a nurse, Erin helps offer hope, support, consistency, and a sense of calm in a world where having a child with complex medical needs may be chaotic. She loves the opportunity to create a relationship with patients and families. Every patient is unique, and she learns from each patient she encounters. At this conference, Erin will be speaking on TSC-related research projects occurring at the Carol & James Herscot Center.

To purchase a virtual ticket, go to: https://because.massgeneral.org/event/2024-herscot-center-for-tsc-virtual-conference/e591960

09/03/2024

We are a little under 5 weeks away from hosting our virtual TSC conference on TSC-Associated Neuropsychiatric Disorders (TAND).

We would like to share a speaker spotlight on Dr. Robert Doyle. He began his psychiatry career primarily treating autism which often overlaps with TSC and epilepsy. Dr. Doyle’s prior experience made him a perfect fit with the Carol & James Herscot Center. We are excited to have him as a member of our team, and looking forward to his talk at the fall conference!

To purchase a virtual ticket, go to: https://because.massgeneral.org/event/2024-herscot-center-for-tsc-virtual-conference/e591960

Address

Boston, MA

Website

https://www.massgeneral.org/neurology/tsc/

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