Herscot Center for TSC News and Events

THRIVE Events

2018 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.

  • Ages 18 and over
  • Dates: Monthly. The group will be held the third Thursday of each month thereafter.
  • Location: MGH Main Campus: 175 Cambridge Street
  • Time: 4-5:15 pm

If you are interested in this event, please contact the THRIVE program at 617-724-2954.


2018 Pediatric Epilepsy Wellness Events

Stress Management and Resiliency Training

Develop Lifelong Techniques for Managing Stress and Anxiety. This program is brought to you by the MGH Thrive program in collaboration with the Benson- Henry Institute. The Benson-Henry Institute for Mind Body Medicine offers resiliency-building skills that can make all the difference! Their research-based approach has been proven to help reduce anxiety, and strengthen memory.

In this 1-session workshop, you will learn:

  • When stress becomes a problem and how to recognize your personal stress triggers
  • Techniques to stay calm in stressful situations
  • How to build develop lifelong positive habits that enhance personal resiliency

Leadership: This program is led by Rana Chudnofsky, MEd, under the administration of BHI Senior Director Marilyn Wilcher

For more than 30 years, the Benson-Henry Institute has provided relaxation response-based coping skills and life management tools to help participants better manage daily stress and improve overall health.

  • Who: MGH TSC patients, Age 18 and over
  • When: Saturday September 8th, 2018, 10:00 am to 1:00 pm
  • Where: MGH

Doggonit: Epilepsy is Ruff

During this 6 week session, adolescent epilepsy patients will work with a certified trainer to train rescue dogs twice per week. The goal of this activity is to improve the quality of life for both patients and dogs. The adolescents and rescue dogs will learn from each other as they work together and teach each other valuable life skills.

  • Who: MGH Pediatric Epilepsy Patients, Age 12-22
  • What: Work with professional dog trainers to help train rescue dogs
  • When: Starting September 17, 2018 (Mondays and Wednesdays)
  • Where: K9 Top Performance Reading, MA

Sibling Group

Thrive is offering a weekend group session for the siblings of our patients. This group is open to children between 9 and 16 years old. The event will include crafts, games and activities. When children participate in structured group programs they have opportunities to increase their coping skills. Connecting with other children experiencing similar emotions and sharing similar challenges can be an opportunity to normalize experiences and also learn new skills. Leigh Horne Mebel, MSW, LICSW is in charge of running this group. Ms. Mebel is one of the Thrive program founders and has extensive experience with pediatric epilepsy and with individual and group therapies.

  • Date: Sunday, October 7, 2018
  • Location: MGH Main campus (specific location TBD)
  • Time: 1:00-3:00 pm

Ketoween: Halloween for our patients on Dietary Therapy

Wear your costumes and come celebrate with crafts and spooky fun! This year's event will be at the Museum of Science in Boston. Kids will have access to the museum for the full day following the event.

  • When: October 21, 2018, time TBD
  • Where: Museum of Science

NEW Virtual Parent Group

We know how busy life can be as a parent, therefore, we are trying out a format change for our Parent group. We hope that conducting this group virtually will make participation easier for those near and far. We will also be changing our format by introducing a different topic for each session. Each meeting will start with a presentation on the topic and then an opportunity for questions and open discussion.

Parent groups offer parents the opportunity to share their experiences as well as to develop strategies to help their child manage difficulties with attention and emotional behavioral dysregulation. This group, led virtually by our Pediatric Epilepsy Social Worker and Nurse, will be held the first Thursday of every month. Please call our office for more details: 617-724- 2954.

  • When: The first Thursday of every Month from 7:00 to 8:15 pm, starting April 2018
  • Where: Anywhere you can access a phone or computer to connect to webex

NEW Virtual Adolescent Social Group

Connect with peers over common interests: tv shows, books, movies, sports. This virtual group allows our adolescent patients to connect with each other in a low pressure online setting. This group will be guided by our Social worker and Nursing staff.

This activity will serve to allow anxious or shy patients to ease into a social setting; peers that may be going through similar experiences due to their medical condition. Each 4 week session will focus on a different topic.

Please call our office for more details: 617-724- 2954.

  • When: Starting the First Tuesday in November: Running for 4 weeks
  • Where: Anywhere where you can access a phone or computer to connect to to webex

News

Currently Browsing:2016

  • More Patients, Better Medicine

    Friday, November 18, 2016  Research

    Mass General Hospital’s Herscot Center for Tuberous Sclerosis Complex is an Evolving Model of Integrated Care for a Complex Disease

Videos

  • Diagnosing TSC

    Diagnosing TSC

    Neurologist Elizabeth Thiele explains that diagnosis of TSC is based on the clinical features common in the disorder.

  • Genetics Video

    Genetics

    Neurologist Elizabeth Thiele explains that TSC is a genetic disorder than can be passed down through a family.

  • Cause of TSC

    Cause

    Neurologist Elizabeth Thiele discusses the difference between spontaneous mutations and inherited TSC.

  • About TSC Introduction

    Introduction

    Neurologist Elizabeth Thiele discusses the variability and spectrum of tuberous sclerosis complex.

  • diagnosis and treatment of TSC

    About-Today

    Neurologist Elizabeth Thiele explains how new technology and research have changed the diagnosis and treatment of TSC.

  • How TSC Affects the body - brain

    Brain

    Neurologist Elizabeth Thiele describes the three types of brain findings that are common in people with TSC.

  • Autism

    Mental Health and Behavior: Autism

    In this video, neurologist Elizabeth Thiele explains that autism spectrum disorder is often associated with TSC.

  • How TSC Affects the Body: Eyes

    Eyes

    Neurologist Elizabeth Thiele provides an overview of how TSC can affect the eye.

  • How TSC Affects the Body: Heart

    Heart

    Pediatric cardiologist Ana Maria Rosales provides an overview of how TSC can affect the heart.

  • How TSC Affects the Body: Kidneys

    Kidneys

    Nephrologist David Steele provides an overview of how TSC can affect the kidneys.

  • How TSC Affects the Body: Lung

    Lung

    Pulmonologist Jayaraj Rajagopal discusses how lymphangioleiomyomatosis (LAM) can affect the lungs in people with TSC.

  • Mental Health and Behavior - Dr. Danforth

    Mental Health and Behavior - Dr. Danforth

    In this video, psychiatrist Nicole Danforth explains that mental health concerns can change as a person with TSC ages.

  • Mental Health and Behavior-Dr. Danforth

    Mental Health and Behavior-Dr. Danforth

    Psychiatrist Nicole Danforth provides an overview of the mental health and behavioral issues that are common in TSC.

  • Mental Health and Behavior-Treatment

    Mental Health and Behavior-Treatment

    Psychiatrist Nicole Danforth gives an overview of mental health and behavioral treatment options for people with TSC.

  • How TSC Affects the Body-Other

    How TSC Affects the Body-Other

    Neurologist Elizabeth Thiele explains that other parts of the body, such as teeth and bones, can be affected by TSC.

  • Seizures

    Seizures

    Neurologist Elizabeth Thiele explains that seizure disorders are very common in people with TSC.

  • Seizures-Treatment

    Seizures-Treatment

    Neurologist Elizabeth Thiele discusses the treatment options that are available for TSC-related seizures.

  • How TSC Affects the Body: Skin

    Skin

    Dermatologist Joop Grevelink provides an overview of how TSC can affect the skin.

  • How TSC Affects the Body: Skin

    Skin

    Dermatologist Joop Grevelink provides an overview of how TSC can affect the skin.

  • Genetic Counseling: What to Expect

    Genetic Counseling

    Genetic counselor Penelope Roberts explains what families can expect to learn during a genetic counseling session.

  • Medical Care

    Medical Care

    Neurologist Elizabeth Thiele talks about the importance of integrated care throughout an individual's life.

  • Isolation support

    Isolation

    Psychiatrist Nicole Danforth explains that connecting with others can help TSC families feel less isolated.

  • Genetic Counseling

    Genetic Counseling

    Genetic counselor Penelope Roberts explains that when inherited, the severity of TSC's symptoms cannot be predicted.

  • Support: Parents

    Support: Parents

    Psychiatrist Nicole Danforth explains that it's important for parents to take time for themselves and each other.

  • Talking about TSC: Preparing

    Talking about TSC: Preparing

    Psychiatrist Nicole Danforth discusses the importance of parents preparing to talk with children about TSC.

  • Support: Siblings

    Support: Siblings

    Psychiatrist Nicole Danforth explains the importance of educating and nurturing siblings who do not have TSC.

  • /assets/images/thumb/th_audio_thumb.gif

    Support: Structure

    Psychiatrist Nicole Danforth explains that children with TSC benefit from structure and consistency at home.

  • Care: Talking

    Care: Talking

    Neuropsychologist Amy Morgan provides basic information on how parents can talk with their children about TSC.

  • Research

    Research

    Neurologist Elizabeth Thiele talks about the advances in science that have led to clinical drug trials for TSC.

  • Brad

    TSC Families: Brad

    Forty-year-old Brad's most troubling symptoms of TSC are cognitive limitations and mental health and behavior issues.

  • Jacob Video

    TSC Families: Jacob

    Jacob was diagnosed with TSC at five months old. Shortly after diagnosis he began having a serious type of seizure known as infantile spasms.

  • danica video

    TSC Families: Danica

    Thirteen year old Danica is mildly affected by TSC. Her most recognizable symptoms are her angiofibromas.

  • Michael video

    TSC Families: Michael

    Michael is severely affected by TSC. For most of his life he has had seizures that have been difficult to control.

  • steve video

    TSC Families: Steve

    The diagnosis of Steve's sister Amy led to the diagnosis of many other family members spanning three and possibly four generations.

  • Troy video

    TSC Families: Troy

    Troy is a senior in high school. His seizures have had a serious impact on his ability to learn.

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