Individuals & Families

Publications

Brochures and Books

intro-to-tsc-2014-coverAn Introduction to TSC

This comprehensive brochure helps explain TSC and its variable features, outlines diagnostic criteria and commonly needed medical tests, and provides an overview of TS Alliance services and mission.

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spanishintro2014coverUna Introduccion Al CET

Complejó de Esclerosis Tuberosa

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The TS Alliance is Here to Help

This brochure offers a brief overview of the Tuberous Sclerosis Alliance (TS Alliance), tuberous sclerosis complex (TSC), and how to get support easily if needed.

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A Basic Introduction to Clinical Trials

Because participating in a clinical trial is an important personal decision, this brochure offers basic information to help you make an informed decision.

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Infantile Spasms & Tuberous Sclerosis Complex

This brochure describes what you need to know about infantile spasms, signs to look for, what you should do, and more.

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personaljourneyswithtsccoverIn Their Own Words: Personal Journeys with TSC

This booklet was compiled to give readers a glimpse into the lives of ordinary people and families who face the challenges of TSC on a daily basis, whether they are infants, children, teens or adults.

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turbo-scott-coverThe TSC eBook and Graphic Novel: Turbo & Scott

The eBook explains TSC to children in a fun and easy to read format, while the graphic novel was developed especially for teens and young adults with TSC.

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livingwithtsLiving with Tuberous Sclerosis Complex: Stories of Love and Hope

This book is a unique, direct and compassionate source of information and hope. Families will know they are not alone in their struggles with tuberous sclerosis complex (TSC). It contains 26 biographies, or “stories of love,” by parents of mildly affected children to severely affected children and by six adults with TSC. The book is free for individuals and families in the United States who are directly affected by TSC.

If you are interested in receiving or ordering a copy, please e-mail the TS Alliance at info@tsalliance.org or call (800) 225-6872.


Tuberous Sclerosis Complex

This book provides a comprehensive overview of the molecular basis and clinical features of the genetic disorder tuberous sclerosis.  Special focus is placed on novel insights into the signal transduction pathways affected by the disease and genotype phenotype correlations. Existing and potential therapies are also discussed in depth.

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waverly-posterWaverly and The Blue Dolphins

Illustrated children’s book written by the grandmother of a child with TSC.

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Perspective Magazine

Perspective – Spring 2017

TSC Patient-Focused Drug Development Meeting with the FDA, What Are FBA and BIP?, TSC Clinic Screening Tool, TSC Clinics “Up Close:” Nicklaus Childrens Hospital Miami TSC Clinic

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perspective-fall2016-coverPerspective – Fall 2016

Engles Family Foundaton Pledges $1.25 Million to Create New TSC Research Fund; Rewriting Aiden’s TSC Story; Consider Participating in a Clinical Trial; Advances in TSC Research

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Perspective – Summer 2016

My Inspiration in the Fight Against TSC; The Arc: A New Partnership to Support People with TSC; TS Alliance Honors Volunteers and Community Alliance of the Year

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perspectivecover-winter2016Perspective – Winter 2016

Taking Life One Jog, One Mile and One Day at a Time; TSC Clinics Up Close: Le Bonheur Children’s Hospital; Comedy for a Cure Celebrates 15 Years

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perspective-fall2015Perspective – Fall 2015

A History of Treating TSC – We’ve Come A Long Way, Seeing TSC as a Gift, Highlights from the 2015 International TSC Research Conference, My Trip to China

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perspective-summer15coverPerspective – Summer 2015

Remembering Dee Triemer, TSC Clinics Up Close – Israel, Databases and Registries: What Are the Differences?

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perspective-winter15Perspective – Winter 2015

My Earthly Journey with Tiara Has Ended, Section 504: Civil Rights Law You Should Know, Adults with TSC Corner, Volunteer Participation in Clinical Trials Helps Improve the Lives of People with TSC

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perspective-fall-2014-coverPerspective – Fall 2014

My Angel Babies: A Grandmother’s Viewpoint; Adults with TSC Corner; The Importance of Advocating for Our TSC Children at School; TSC Clinics “Up Close”

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perspective-summer14-coverPerspective – Summer 2014

2014 World TSC Conference Review; School-Related Resources; TS Alliance 40th Anniversary Celebration; Adults with TSC Corner; TSC Research Roundup; Legacy of Love

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perspective-winter14-coverPerspective – Winter 2014

The Critical Importance of Providing TSC Research Funding to Young Investigators; Forty Years Changing Lives 1974-2014; A New Global Alliance; Special Insert: 2014 World TSC Conference

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perspective-fall-2013-coverPerspective – Fall 2013

When I Think of Piper, Clinical Trial Recruitment Update, Q&A with Janie Frost About the 2014 World TSC Conference, New Guidelines Announced for Diagnosis, Surveillance and Management of TSC

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perspec-summer13coverPerspective – Summer 2013

Amy’s Journey of Hope, Fear, Love and Faith; 2012 International TSC Clinical Consensus Conference Recommendations; MRI and the VNS Therapy System; Early Intervention for Children with TSC Ages Birth to Three Years

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perspective-winter13-coverPerspective – Winter 2013

New TSC Diagnosis, Surveillance and Management Guidelines; Update on 2012 TSC Research Efforts; One Family’s Experience in a Clinical Trial

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perspective-fall12-coverPerspective – Fall 2012

A Brother to Love, Honor and Cherish; Rose Chodzinski’s Story; Questions to Ask Your Healthcare Provider; TSC Clinic Ambassador Program; TSC Clinics “Up Close”

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perspsummer2012coverPerspective – Summer 2012

Hope Rings True for Me and My Family; The Integral Role of the Nurse Practitioner in TSC Clinics; 2012 TSC Clinical Consensus Conference Update

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Perspective – Winter 2012

Unlocking a Cure for Tuberous Sclerosis Complex; TSC Clinics “Up Close”; Promising Science on the Possibility of Preventing Epilepsy

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perspective-fall2011-coverPerspective – Fall 2011

Young Adult with TSC Gains His Voice; In Memorium: Dr. Mark Mausner; TSC Clinics “Up Close”; 2011 Drug Discovery Summit

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perspective-summer2011-coverPerspective – Summer 2011

A Special Painting Shows We Are Not Alone; What Exactly is “ESY?”; TSC Clinics “Up Close”; TS Alliance Names New Chief Scientific Officer

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perspective-winter2011-coverPerspective – Winter 2011

Afinitor Approved by FDA; Sleep in TSC: Why Is It a Problem for So Many Individuals with TSC?; Personal Determination and a Mother’s Support Lead to Independence; Connecting the TS Alliance, TSC Community and TSC Clinics

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perspectivefall2010-coverPerspective – Fall 2010

My Son’s Evolution from Boy to Man; Why Government Advocacy?; Constituent Survey Results; TSC Natural History Database Update

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summer2010perspcoverPerspective – Summer 2010

My Daughter’s TSC Story: Triumphing Over Seizures; Sabril (Vigabatrin): Before and After Approval by the FDA; Research Update: Biomarkers for TSC and LAM

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perspective-winter2010-coverPerspective – Winter 2010

The Amazing Strides in TSC Research; Don’t Learn the Hard Way; TSC Clinics Up Close

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Life Stages Guides and Personal Journals

Life Stages Guides

The Life Stages Guides were developed by the TS Alliance resource information to individuals with TSC and their families and/or caregivers for many of the non-medical issues frequently experienced from infancy to adulthood.

Personal Journals

Because the treatment of tuberous sclerosis complex may involve a variety of healthcare professionals, it is very useful to have a working system to track ongoing medical care and treatment. These journals were specifically designed to provide you with an organized way of keeping accurate records of medications, procedures, appointments, therapies, surgeries, tests and manifestations.

If you are interested in ordering a copy or are unable to download the PDF versions, please e-mail the TS Alliance at info@tsalliance.org or call (800) 225-6872. These are FREE journals, one per TSC individual.

TSC Research Article Summaries

patientinform_logoThe TS Alliance is a member of patientINFORM, an organization that provides access to numerous peer-reviewed medical journals. We present summaries of research articles of interest to the TSC community. These summaries are intended to help you understand the latest TSC research, and help you and your family have more productive discussions with your doctors and make better informed decisions about your/your child’s health care. The information provided is not a substitute for advice from your doctor or other health care providers. If you have questions about this material, please contact your doctor.

When you see the patientINFORM logo next to a summary, you’ll know the journal article it discusses comes from one of the medical journals participating in patientINFORM.  Those summaries will have a link to the full journal article in PDF format.

Categories

Select a category below to read the lastest in TSC research: