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Tuberous Sclerosis Complex
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 and mental health and behavioral problems, such as attention deficit, depression, and autism.
For more information about tuberous sclerosis complex, visit the Herscot Center's Living with TSC website.
In addition to offering clinical expertise in the most advanced treatment of all the possible manifestations of TSC, the Herscot Center supports collaborative research and educational programs for medical students, advanced trainees, and practicing physicians. This multidisciplinary approach to increasing awareness, aiding diagnosis, and developing treatments for the disease serves to advance the Herscot Center's mission to provide the most sophisticated and comprehensive TSC care in the world.
The Herscot Center has an active clinical research program with a research focus on the neurological aspects of TSC.
Community, Family, and Medical Professional Education
The Herscot Center is committed to improving education about TSC on all levels including educating families affected by TSC, their communities, and medical professionals. The educational programs of the Herscot Center include:
The Living with TSC Web site is an educational resource from the Carol and James Herscot Center for Children and Adults with Tuberous Sclerosis Complex. The mission of the site is to provide a baseline understanding of tuberous sclerosis complex and the variability of the disorder from one person to the next and throughout an individual's life. The site includes videos featuring Herscot Center specialists and texts that explain the range of symptoms of and treatments available for TSC. Video profiles of TSC families are a unique and important feature of the Living with TSC Web site.
The Living with TSC Web site includes videos featuring Herscot Center specialists and texts that explain the range of symptoms of and treatments available for TSC. Video profiles of TSC families are a unique and important feature of the site.
Adult Groups for Tuberous Sclerosis Complex patients
THRIVE offers patient groups for our patients with TS. Leigh Horne Mebel, MSW, LICSW is in charge of running the groups. Ms. Mebel is one of the Thrive program founders and has extensive experience with TS and with individual and group therapies. When patients participate in structured group programs they have opportunities to increase their coping skills, learn new ways to help them navigate our complex social world, and develop their ability to self-regulate. Connecting with other patients experiencing similar emotions and sharing similar challenges can be an opportunity to normalize experiences and also learn new skills.
As part of the Patient Groups, the Thrive Program provides mentorship training for interested participants. Patients who are mentored benefit from being provided with role models, encouragement from other patients with similar backgrounds, and help building social skills and a greater connectedness to others. Training of peer mentors is designed to help patients build their communication, planning and reasoning skills and strengthen their ability to take others' perspectives.
Through the support of people committed to furthering understanding and advancing treatment of tuberous sclerosis complex (TSC), our physicians and staff are in a stronger position to make great things possible at the Mass General Herscot Center for Tuberous Sclerosis Complex. Gifts to the Center’s general fund will give leaders a source of flexible funding to apply when and where it is needed most, to help those whose lives are impacted by TSC. You may also choose to designate your gift in support of the center’s clinical, research or educational missions.
For more information about giving to the Herscot Center, please contact:Heather MacLean Development Office Massachusetts General Hospital 617-643-0503 email@example.com
There are a variety of ways to support the Mass General Herscot Center: Donate an outright gift of cash or securitiesMaking an outright gift to the Mass General Herscot Center allows your donation to be put directly to use in advancing the understanding and treatment of TSC and related disorders.A gift of cash is the most common and convenient method of donating to the Herscot Center. To donate via mail, please make your check payable to MGH-Herscot Center Fund and send it to:
Massachusetts General HospitalMGH Development Office—Suite 540125 Nashua StreetBoston, MA 02114
Establish an Endowed FundA robust endowment is needed to sustain the center’s programs and services. For example, a named and endowed faculty position will create protected time dedicated to research and teaching, while also ensuring that faculty can maintain clinical time to focus on their patients’ special needs. All endowed funds are carefully managed for growth, and will support the hospital in perpetuity. Endowed funds may also serve as distinguished tributes to loved ones by bearing their names. A minimum of $100,000 is required to establish an endowed fund. Planned Giving Opportunities and BequestsDonors often choose to make a contribution in the form of gifts that provide them and/or their beneficiaries with income for life. These arrangements can also provide donors with significant tax benefits. This invaluable type of support builds a foundation of hope for Mass General patients and families — those who come to the hospital in search of exemplary care today and those who will come in the future.
Learn more about planned gifts to Mass General on our planned giving page. https://giving.massgeneral.org/planned-giving/
Leverage Matching Gifts from Your Workplace Many companies match charitable gifts made by their employees, retirees and directors. Please consult your company’s human resources department to learn how your workplace matches charitable contributions to hospitals, and how you might be able to increase the value of your individual donation in this way. For more information about matching gifts, please e-mail us or call Shana Novak at 617-726-2200.
Host an EventGet together with friends and family and support the Mass General Herscot Center. Whether you host a walk, benefit or golf tournament, you can have fun and help the hospital. Click here to learn more. https://giving.massgeneral.org/crowdfunding-community-fundraising/ Mass General is grateful to the dedicated volunteers who work tirelessly to build support for the hospital. By finding new ways to engage the community and help raise funds, you support programs that provide the highest quality care to patients, advance care through biomedical and clinical research, educate future leaders in the healthcare professions and improve the health of the diverse communities we serve.
Remote Patients: Second Opinion
This service is for prospective patients, unable to travel to Boston, who have questions about Tuberous Sclerosis Complex. This service allows you to receive a second opinion on your current diagnosis and treatment plan without having to travel to Dr. Thiele’s office.
If you are interested, please visit www.massgeneral.org/second-opinions. This website will provide you with the directions on how to start a case. Please remember to request Dr. Thiele as the reviewer of your case. If you have any questions please contact our office at 617-726-0241.
Administrative Offices:Massachusetts General Hospital175 Cambridge Street, Suite 340Boston, MA 02114
Clinical Facilities:Massachusetts General HospitalYawkey Building6th Floor, Suite 6BBoston, MA 02114
For more information or to make an appointment contact:Ayahnna WilliamsPhone: 617-726-0241Fax: 617-726-0230
Driving directions to the Yawkey Center (PDF, 188k)
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.
It is important for all individuals with tuberous sclerosis complex (TSC) to be monitored throughout their life for possible medical complications from the disorder. The Herscot Center offers coordinated care by providing access to a wide range of physicians who specialize in treating TSC.
Clinical Nurse Coordinator
Mass General Hospital’s Herscot Center for Tuberous Sclerosis Complex is an Evolving Model of Integrated Care for a Complex Disease
The Carol and James Herscot Center for Tuberous Sclerosis Complex (TSC) at Massachusetts General Hospital and MassGeneral Hospital for Children is using genetic research to better understand TSC and other diseases like cancer, autism and obesity.
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