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PUBLICATIONS/INFORMATION SHEETS

Below are publications provided by the Tuberous Sclerosis Alliance (TS Alliance). Visitors can download and read some of the publications using Adobe Acrobat Reader. Click here to go to Adobe's Web site to download a free version of Adobe Acrobat Reader.

Life Stages Guide

CLICK HERE for more information on the Life Stages Guide or click on a cover below to view the guides (pdf versions). 



The Early Years Guide of the Life Stages Program (ages 0-5) 

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The School Years Guide of the Life Stages Program (ages 6-13) 

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The Young Adult Guide of the Life Stages Program (ages 14-21) 

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The Adult Years Guide of the Life Stages Program (ages 21 and above)

Information Sheets

TS Alliance "Information Sheets" provide resources for additional information about tuberous sclerosis, both for families affected and to share with various physicians.

Click on the PDF link below for the "Information Sheet" that you would like to download. You will need Adobe Acrobat Reader to view the documents. Click here to go to Adobe's Web site to download a free version of Adobe Acrobat Reader.

  • Accepting the diagnosis PDF
  • Adolescents with tuberous sclerosis complex PDF
  • Attention deficit hyperactivity disorder (ADHD) and tuberous sclerosis complex PDF
  • Cardiac manifestations in people with TSC PDF
  • Current clinical guidelines for the monitoring and treatment of TSC dermatological involvement PDF
  • Eligibility for social security benefits PDF
  • Employment and the ADA PDF
  • Epilepsy surgery for tuberous sclerosis patients PDF
  • Financial planning PDF
  • Genetic testing for TSC PDF
  • Geneticists: why do I need them?  PDF
  • Guardianship and other alternatives PDF
  • Images of the brain PDF
  • Infantile spasms in children with TSC   PDF
  • Information for teachers PDF
  • Intellectual and behavioral development problems in preschoolers with TSC PDF
  • Learning disability and behavior in TSC PDF
  • Making the most of your doctors visit PDF
  • Mental retardation in tuberous sclerosis complex PDF
  • Neuroimaging in tuberous sclerosis complex PDF
  • Processing information in the brain PDF
  • Psychiatric and behavioral issues in adults PDF
  • Psychopharmacology and the child with TSC PDF
  • Pulmonary manifestations PDF
  • Renal manifestations of TSC PDF
  • Seeking residential supports PDF
  • Seizure first aid PDF
  • The brain and TSC PDF
  • The courage to grieve PDF
  • The spectrum of attentional problems in individuals with tuberous  sclerosis complex PDF
  • Treating skin disorders associated with tuberous sclerosis PDF
  • Tuberous sclerosis facts for teachers PDF
  • Tuberous sclerosis and autism spectrum disorders PDF
  • Tuberous sclerosis Q and A  PDF
  • Understanding the genetics of TSC PDF
  • Warning signs in tuberous sclerosis PDF
CLICK HERE to view an article written by Drs. Franz and Glauser on tuberous sclerosis complex recently published on eMedicine.  eMedicine is on online resource providing current clinical knowledge to physicians and health care professionals. All of eMedicine's original content undergoes four levels of physician peer review. 
About the Authors:
David N. Franz, M.D., is the director of the Tuberous Sclerosis Clinic at Children's Hospital Medical Center.  He also serves as associate professor of pediatrics and neurology at University of Cincinnati.  He received his M.D. from Ohio State University College of Medicine, Columbus, Ohio in 1985. He completed his residency in pediatrics at Wright State University Affiliated Hospitals in Dayton, Ohio and his fellowship in neurology at Children's Hospital Medical Center in Cincinnati.  Dr. Franz is a member of American Academy of Neurology, American Academy of Pediatrics and Child Neurology Society. 

Tracy A. Glauser, M.D. is associate professor of pediatrics and neurology at University of Cincinnati.  He received his M.D. from Jefferson Medical College, Philadelphia in 1985.  He completed his residency in pediatrics at Johns Hopkins Hospital in Baltimore, Maryland and a fellowship in child neurology at Children's Hospital of Philadelphia and in epilepsy and electroencephalography at St. Louis Children's Hospital. 

Newsletters

PERSPECTIVE - SPRING 2006 PDF File
Cover Story: "One Man's Pursuit for Health Turns Into Support for Those Affected by TSC."

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PERSPECTIVE - WINTER 2006 PDF File
Focus on National TSC Conference.

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PERSPECTIVE - FALL 2004 
PDF File
This issue focuses on volunteer appreciation and adults with TSC.

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PERSPECTIVE - SUMMER 2004 
PDF File
This issue includes an update on the TSC Clinical Database.  

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PERSPECTIVE - SPRING 2004  PDF File
The TS Alliance celebrates 30 years.  

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PERSPECTIVE - WINTER 2003 
PDF File
This issue reflected on the accomplishments made during 2003.  

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PERSPECTIVE - FALL 2003  PDF File
This issue highlights how the ways TS Alliance members are making a difference in communities all over the country.  

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PERSPECTIVE - SUMMER 2003 
PDF File
This issue highlights how several celebrities have lent their names to raise awareness.

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PERSPECTIVE - SPRING 2003 
PDF File
This issue focuses on how the combined efforts of members of the TS community make a difference to so many.      

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PERSPECTIVE - WINTER 2002 
PDF File
This issue focuses on the many individuals who volunteer to further the TS Alliance mission.    

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PERSPECTIVE - FALL 2002 
PDF File
This issue illustrates that the TS Community is an important source of support and inspiration.  

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PERSPECTIVE - SUMMER 2002 
PDF File
This issue illustrates how individuals can make a difference in the TS community.  

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PERSPECTIVE - SPRING 2002  PDF File
"Community of Care" is the focus of this issue, with many exciting project updates.

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PERSPECTIVE - WINTER 2001
PDF File
This issue focuses on "Strengthening our Community", highlighting the many people throughout the TS Alliance network who are making a difference.

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PERSPECTIVE - FALL 2001 
PDF File
This special issue highlights pictures and information from the 2001 National Family Conference.

Annual Reports

2003 Annual Report PDF File
Get the most up-to-date information about the financial position of the TS Alliance, plus reports on the major activities completed during the fiscal year.

2002 Annual Report PDF File

2001 Annual Report PDF File

Brochures

TS ALLIANCE RESOURCE BROCHURE  PDF File
The purpose of this brochure is to explain the various publications, programs and services offered through the TS Alliance. 

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AN INTRODUCTION TO TSC  PDF File
The purpose of this brochure is to explain TSC and its variable features; outline some of the commonly needed medical tests; and to help individuals cope with the diagnosis. The TS Alliance exists to provide the guidance, support, services and networking to make dealing with this disorder a little bit easier.

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Mi niño tiene Esclerosis Tuberosa: UN FOLLETO PARA PADRES  PDF File

Journals

TUBEROUS SCLEROSIS JOURNAL  PHASE II  PDF File

TUBEROUS SCLEROSIS JOURNAL  PHASE I  PDF File
Because the treatment of tuberous sclerosis may involve a variety of health care professionals, it is very useful to have a working system to track ongoing medical care and treatment. This journal was 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 version, please e-mail the TS Alliance at info@tsalliance.org or send a fax to (301) 562-9870. These are FREE journals, one per TS individual. There will be a $20 shipping fee for international orders. 

Books

LIVING WITH TUBEROUS SCLEROSIS: 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. It contains 26 biographies, or "stories of love", by parents of mildly affected children to severely affected children, and by six adults with TS.

The book is free for individuals and families who are directly affected by TS. If you are interested in receiving or ordering a copy, please e-mail the TS Alliance at info@tsalliance.org or send a fax to (301) 562-9870.

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TUBEROUS SCLEROSIS COMPLEX, THIRD EDITION
This edition includes updated information on all aspects of tuberous sclerosis, from the genetics of the disease to specific organ involvement. Newly revised diagnostic criteria are included, as well as a chapter on the impact of the diagnosis on the patient and their family.

If you are interested in ordering a copy of this book, please e-mail the TS Alliance at info@tsalliance.org or send a fax to (301) 562-9870. The reduced price of the book is $76, which includes shipping and handling in the U.S. There will be an additional $15 shipping fee for international orders.

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THE SWEETEST SOUND: THE MIRACLE OF TAYLOR HESS
This book weaves together a gut-wrenching medical and personal journey, including the Hess families' ups and downs, into a narrative filled with sadness, surprise and sunshine. Mrs. Hess explains how Taylor, a child with TS, has beaten the odds through various medical means to become a bright, happy child.

This book can be obtained by sending a check for $12 (shipping included) to: The Sweetest Sound, P.O. Box 346, Glenwood, IA 51534. You can also order the book through the Web site www.taylorsmiracle.com. Part of the proceeds benefit the Tuberous Sclerosis Alliance.


 
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Unlock the Cure: The Tipping Point in the Battle Against TSC
Tuberous Sclerosis Alliance Overview
La Esclerosis Tuberosa (Spanish Intro to TSC)
Infantile Spasms & TSC: A Devastating Diagnosis
Questions & Answers About the TS Alliance


ABOUT TSC
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How is TSC Diagnosed?
Signs of TSC
Genetics of TSC

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