About Us

Dr. Thiele
Dr. Elizabeth Thiele

Tuberous sclerosis complex is a relatively common genetic disorder that affects different individuals in different ways. Some affected individuals can spend most of their lives not even knowing that they have the disease, while others can be significantly affected even from an early age. TSC can affect many different organ systems in characteristic ways, but it is impossible to predict which symptoms will impact any individual patient. This creates great uncertainty for a person newly diagnosed with TSC, or for the family of a child with TSC. What will the future hold? No one can know for sure, but clear information can help to demystify the disease and help in the development of an effective management plan for handling the disease.

Carol and James Herscot have lived though this uncertainty. They have worked very hard to make sure that no family or person affected by TSC needs to struggle (as they have over the years) to find clear and accurate information about this disorder and to access care for a loved one. By establishing the Carol and James Herscot Center for Children and Adults with Tuberous Sclerosis Complex at the Massachusetts General Hospital, the Herscots have created a comprehensive clinical center for diagnosis and treatment of TSC for both children and adults. The Herscot Center also provides educational programs about TSC both for families and for clinicians.

The Living with TSC Web site is a collaboration between the Herscot Center and WGBH Educational Foundation. Our goal is to provide clear information about the range of medical consequences of tuberous sclerosis complex throughout one's lifetime. The sections of the site will guide you to basic information about the disorder (see Tuberous Sclerosis Complex), descriptions of how various organ systems are affected by TSC at different times in a person's life (see How TSC Affects the Body), the coordinated care approach that our clinic uses (see Coordinated Care), and an Interactive Timeline that gives an at-a-glance look at issues relevant to individuals with TSC at different ages.

Throughout the site you will find videos featuring our specialists and supporting text that explain the range of symptoms and treatments for TSC. We have also described the latest advances in our scientific understanding of the causes of TSC, offering hope for future treatments.

Perhaps most importantly, through the video profiles in the TSC Family Stories section of the site, you will meet some of my heroes. These individuals and families live with the hopes, the fears, and the reality of TSC every day. Each has a different and individual story, and yet their stories are similar in that all are living with TSC.

Elizabeth A. Thiele, MD, PhD
Director of the Carol and James Herscot Center for Children and Adults with Tuberous Sclerosis Complex

The Herscots

Carol and James Herscot and Dr. Thiele
From left to right: James and Carol Herscot with Dr. Thiele.

The Carol and James Herscot Center for Children and Adults with Tuberous Sclerosis Complex was made possible through the singular generosity of Mr. and Mrs. James Herscot.

Nearly 40 years ago, Carol and Jim Herscot found themselves in a terrifying situation. Their son, Brad, began having seizures, followed by other symptoms that the Herscots now know are typical of tuberous sclerosis complex (TSC). "At the time, no one knew about this disease," Mrs. Herscot recalls. "We were so alone and so frightened. No one could answer our questions, despite our going to one specialist after another for advice and guidance."

Despite the isolation they felt, the Herscots never allowed themselves to be defeated by the unpredictable and potentially devastating TSC, nor did they waver in their dedication to their son, who today lives semi-independently. Indeed, the Herscots' commitment to improving the lives of individuals with TSC and their families remains boundless, as evidenced by their extraordinary commitment that establishes Carol and James Herscot Center for Children and Adults with Tuberous Sclerosis Complex at the hospital.

The Herscot Center is a unique resource for children and adults with TSC and their families, featuring state-of-the-art clinical services in the hospital's Yawkey Center for Outpatient Care. The center also offers the full complement of medical specialists in various disciplines needed to provide timely diagnosis of TSC, as well as the comprehensive care that many people require.

Mrs. Herscot worked closely with Elizabeth Thiele, MD, PhD, the pediatric neurologist who directs the center and is one of the nation's foremost TSC experts, to plan the new facility. As a result, the Herscot Center is a haven for individuals affected by TSC and a hub for research and education about the disease.

The TSC clinic at the MGH is one of the few at any hospital to treat both children and adults. Treatment for adults with TSC reflects one of the Herscots' primary concerns. Recognizing that adults with the disease can, with proper support, live fulfilling lives, they have worked tirelessly with the national Tuberous Sclerosis Alliance to raise awareness of TSC and to convey to families that TSC is a lifelong disorder requiring careful and ongoing planning. The Herscot Center at MGH maintains a close collaboration with the TS Alliance.

Dr. Thiele is immensely grateful to the Herscots for their support, and she is particularly struck by their generosity of spirit. "The amazing thing about Jim and Carol Herscot is that their son, Brad, is all set; he has grown up, has a job and is managing with a strong support network," Dr. Thiele says. "Yet they are doing everything possible to see that other families don't have to experience the struggle that they went through."

The Herscot Center at the MGH demonstrates the impact that philanthropy can have. Many individuals with TSC and their families now have hope thanks to the extraordinary generosity of Carol and James Herscot.

WGBH

The site is produced by WGBH Educational Foundation.

Co-Executive Producers
Amy Tonkonogy
Arthur R. Smith

Producer
Kelly Lawman

Associate Producer
Christopher Hastings

Multimedia Designer
Sonali Patel

Multimedia Developer
Jon Whitney

Senior Multimedia Developer
Molly Frey

Content Producers
Steven Bedard
Ken Howard Wilan

Editor
Mary-Kate Shea

Production Manager
Mary Ellen Gardiner

Mix
Dan Lesiw

Video Encoding
Jon Alper

Camera
Lance Douglas
Tom Fahey
Ken Willinger

Illustrations
Katie Caldwell
Rick Pinchera

Audio
Clint Bramesco
Gilles Morin
Paul Green

Business Management
Maria Constantinides, Business Manager
James Barton, Business Manager
Chris Boone, Unit Manager
Amy Stahl, Unit Manager

The production team wishes to thank the families who graciously invited us into their homes and shared their stories with us.

We also wish to thank the doctors and staff at the Carol and James Herscot Center for Tuberous Sclerosis Complex at Massachusetts General Hospital.

Additional thanks to the Division of Signal Transduction at Beth Israel Deaconess Medical Center and the TS Alliance.

Signature images by Paul Bourke.

Funding for this site is provided by the Carol and James Herscot Center for Children and Adults with Tuberous Sclerosis Complex at Massachusetts General Hospital.

Order CD

CD image

The Living with TSC website is also available on CD for usage on your computer. To order the CD please send a check or money order payable to the Herscot Center for TSC. Please remember to include your name and mailing address.

The cost, including shipping, is:

$20 U.S. per CD for orders within the United States
$30 U.S. per CD for international orders

Please send check or money order to:

Herscot Center for TSC
Massachusetts General Hospital
175 Cambridge Street, Suite 340
Boston, MA 02114

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