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.
Complejó de Esclerosis Tuberosa
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.
Because participating in a clinical trial is an important personal decision, this brochure offers basic information to help you make an informed decision.
This brochure describes what you need to know about infantile spasms, signs to look for, what you should do, and more.
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.
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.
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 firstname.lastname@example.org or call (800) 225-6872.
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.
Illustrated children’s book written by the grandmother of a child with TSC.
Eric Schmitt — A Dad Who’s Just Trying to Make a Difference, Upcoming TS Alliance Conferences, Maximizing TSC Research Resources, TSC Clinics “Up Close:” TSC Clinic at Mount Sinai Healthy System
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
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
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
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
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
Remembering Dee Triemer, TSC Clinics Up Close – Israel, Databases and Registries: What Are the Differences?
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
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”
2014 World TSC Conference Review; School-Related Resources; TS Alliance 40th Anniversary Celebration; Adults with TSC Corner; TSC Research Roundup; Legacy of Love
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
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
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
New TSC Diagnosis, Surveillance and Management Guidelines; Update on 2012 TSC Research Efforts; One Family’s Experience in a Clinical Trial
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”
Hope Rings True for Me and My Family; The Integral Role of the Nurse Practitioner in TSC Clinics; 2012 TSC Clinical Consensus Conference Update
Unlocking a Cure for Tuberous Sclerosis Complex; TSC Clinics “Up Close”; Promising Science on the Possibility of Preventing Epilepsy
Young Adult with TSC Gains His Voice; In Memorium: Dr. Mark Mausner; TSC Clinics “Up Close”; 2011 Drug Discovery Summit
A Special Painting Shows We Are Not Alone; What Exactly is “ESY?”; TSC Clinics “Up Close”; TS Alliance Names New Chief Scientific Officer
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
My Son’s Evolution from Boy to Man; Why Government Advocacy?; Constituent Survey Results; TSC Natural History Database Update
My Daughter’s TSC Story: Triumphing Over Seizures; Sabril (Vigabatrin): Before and After Approval by the FDA; Research Update: Biomarkers for TSC and LAM
The Amazing Strides in TSC Research; Don’t Learn the Hard Way; TSC Clinics Up Close
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.
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 email@example.com or call (800) 225-6872. These are FREE journals, one per TSC individual.
Written by Darcy A. Krueger, MD, PhD, this white paper provides easy-to-understand information about the use of vigabatrin to treat infantile spasms and addresses concerns about visual field loss.
The 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.
Select a category below to read the lastest in TSC research: