21. ^i^ Christopher Scott Golden ^i^ Christopher was born and passed away on September 7, 1993, due to tuberous sclerosis. http://www.geocities.com/Heartland/Woods/3102/christopher.html

^i^ Christopher Scott Golden ^i^ Christopher was born/died September 7,1993. I didn't know it was possible to be so happy and sad in the same day. Doing this page about him has helped tremendously in the healing process. It has been almost 7 years and at times can still seem like yesterday. You can learn more about Tuberous Sclerosis here at NTSA (the NTSA website is currently down no word yet on when it will be back up) His Story~ Memorial Pictures Our Family Guest book Bradley Nicholas ^i^ Christopher James ... Graphics coming soon ? Photos @ Yahoo! coming soon ? Moms with all boys Yahoo! CLUBS Close Sibs This Empty Arms Ring site is owned by Jennifer Click for the [ Previous Random NextSite Skip Next Click here for info on how to join Empty Arms Ring Artwork by Cia. Angel Baby Background from: Backgrounds by Marie

22. The Sweetest Sound The Miracle Of Taylor Hess The Hess family must come to grips with the reality that their daughter has tuberous sclerosis. http://www.taylorsmiracle.com

About Taylor's Family Photo Gallery How to order the book Online Resources ... The Sweetest Sound: The Miracle of Taylor Hess Taylor Hess at 18 months Sheryl Hess’s, The Sweetest Sound: The Miracle of Taylor Hess, is the inspiring account of the Hess family coming to grips with the reality that their beloved infant daughter has Tuberous Sclerosis. The story begins with Dave and Sheryl Hess hearing the diagnosis from physicians that their precious baby, Taylor, may never walk, talk, or have much function at all. After the initial shock wears off, the Hesses set out to dispel this declaration armed with early intervention therapies, medicines, and most of all, love. Sheryl sets up "Taylor Command Central" where she bombards Taylor with physical therapy, occupational therapy, speech therapy, and developmental therapy. There is an army of people who come into Taylor’s life to help this little girl be her best. All are touched by Taylor’s sweet nature and motivation to succeed. SEARCH More Search options 1up! Software

23. MEDLINEplus Medical Encyclopedia: Tuberous Sclerosis tuberous sclerosis. miss their normal developmental milestones. Severaldifferent skin lesions are common in tuberous sclerosis. http://www.nlm.nih.gov/medlineplus/ency/article/000787.htm

Skip navigation Medical Encyclopedia Other encyclopedia topics: A-Ag Ah-Ap Aq-Az B-Bk ... Z Tuberous sclerosis Contents of this page: Illustrations Alternative names Definition Causes, incidence, and risk factors ... Prevention Illustrations Tuberous sclerosis, angiofibromas - face Tuberous sclerosis, hypopigmented macule Alternative names Return to top Adenoma sebaceum Definition Return to top A group of 2 genetic disorders characterized by problems with the skin, brain/nervous system, kidneys and a predisposition to tumors. The diseases are named after a characteristic abnormal growth in the brain in the shape of a tuber. Causes, incidence, and risk factors Return to top Tuberous sclerosis is inherited as an autosomal dominant trait although a high percentage of cases are due to new mutations, so there usually is no family history of the disease. It is one of a group of diseases described as neurocutaneous syndromes because of extensive involvement of both the skin and the central nervous system (brain and/or spinal cord). The symptoms of tuberous sclerosis, however, vary considerably from minimally affected people with normal intelligence and no seizures to severely affected people with profound retardation and frequent, difficult-to-control seizures or serious tumors.

24. TSI (Tuberous Sclerosis International) tuberous sclerosis International, A Worldwide Organisation of tuberous sclerosisAssociations. 1618th, 2004 tuberous sclerosis tuberous sclerosis (TS syn. http://www.stsn.nl/tsi/tsi.htm

Tuberous Sclerosis International A Worldwide Organisation of Tuberous Sclerosis Associations Download Report of Venice meeting Sept. 2001 Request for proposals from the Tuberous Sclerosis Alliance TSA International Research Conference Sept. 16-18th, 2004 TUBEROUS SCLEROSIS Tuberous Sclerosis (TS syn. Epiloia or Bourneville's disease) is a common genetic condition which produces abnormal growths in the body from birth throughout life. It can severely affect development and health. Symptoms may include: * Tumours * Epilepsy * Learning Difficulties * Autism * Challenging Behaviour * Renal Complications * A Disfiguring Facial Rash There is no cure for Tuberous Sclerosis yet, only treatment for the symptoms. TS affects 1 in 7,000 and many people carry the gene without serious consequences other than a 1 in 2 risk of having a more severely affected child. TUBEROUS SCLEROSIS INTERNATIONAL The Tuberous Sclerosis International was formed in 1986 as a world organisation of national Tuberous Sclerosis Associations. Goals and Objectives of the T.S.I.:

25. Kolten's Tuberous Sclerosis Page Kolten's story about living with this disease. The daily seizures that took over his life and the amazing surgery that gave it back to him. http://www.Kolten.homestead.com/Kolten.html

Kolten's Surgery Photos Tuberous Sclerosis Alliance Kolten's Tuberous Sclerosis Page Tuberous Sclerosis Alliance Kolten's Tuberous Sclerosis Story WELCOME TO This is our son Kolten's story about living with Tuberous Sclerosis. The seizures that took over his life and the amazing brain surgery that gave it back to him. A Mother's Diary Kolten's Surgery Photos This page was last updated on: February 11, 2003 My Favorite Story For Mother's With a Special Needs Child

26. NORD - Tuberous Sclerosis Offers alternative names, a general discussion and further resources. http://www.stepstn.com/cgi-win/nord.exe?proc=GetDocument&rectype=0&recnu

27. Kolten's Tuberous Sclerosis Page Kolten's story about living with this disease. The daily seizures that took over his life and the Category Health Conditions and Diseases tuberous sclerosis......This is our son Kolten's story about having tuberous sclerosis. Theseizures that took over his Kolten's tuberous sclerosis Page. http://www.kolten.homestead.com/Kolten.html

Kolten's Surgery Photos Tuberous Sclerosis Alliance Kolten's Tuberous Sclerosis Page Tuberous Sclerosis Alliance Kolten's Tuberous Sclerosis Story WELCOME TO This is our son Kolten's story about living with Tuberous Sclerosis. The seizures that took over his life and the amazing brain surgery that gave it back to him. A Mother's Diary Kolten's Surgery Photos This page was last updated on: February 11, 2003 My Favorite Story For Mother's With a Special Needs Child

28. The Australasian Tuberous Sclerosis Society The Australasian tuberous sclerosis Society. http://www.netspace.net.au/~atss/

The Australasian Tuberous Sclerosis Society Home What is TSC? Who are ATSS? News and Calendar Reachout ... About ATSS Turns 21! At the 21st Annual General Meeting held in August 2002, the Australasian Tuberous Sclerosis Society's milestone birthday was celebrated. The 2002 Family Conference Weekend held at the Royal Institute for Deaf and Blind Children in North Rocks, Sydney was yet again a great sucess. Congratulations to the hardworking committee members who made the weekend possible, the informative speakers who gave up their time and all who attended this annual event in the ATSS calendar. ATSS aims to to support TSC families, educate and inform health professionals and the community Registered Charity No. CC25313 - Incorporation No. Y071116-4 - ABN 20 681 174 734 Donations of AU$2 and over are tax deductible

29. New Zealand Tuberous Sclerosis Support New Zealand tuberous sclerosis Support Group. tuberous sclerosis. WHAT CAN THENEW ZEALAND tuberous sclerosis SUPPORT GROUP OFFER ME AND MY FAMILY? http://www.netspace.net.au/~atss/nzts.htm

New Zealand Tuberous Sclerosis Support Group. Tuberous Sclerosis WHAT IS TUBEROUS SCLEROSIS ?: SKIN: DEVELOPMENTAL DELAY: EPILEPSY: BEHAVIOUR: HOW COMMON IS IT? WHAT IS THE OUTLOOK? WHAT IS THE TREATMENT? IS THERE A CURE? COULD ANY OTHER EXISTING MEMBERS OF THE FAMILY BE AFFECTED? .....WILL ANY FURTHER CHILDREN THAT I MIGHT HAVE BE AFFECTED? IS THERE A TEST AVAILABLE TO TELL ME IF MY UNBORN CHILD HAS TS? WHAT CAN THE NEW ZEALAND TUBEROUS SCLEROSIS SUPPORT GROUP OFFER ME AND MY FAMILY? GROUPS TO WHICH THE NZTS SUPPORT IS AFFILIATED CONTACT THE NEW ZEALAND TUBEROUS SCLEROSIS SUPPORT GROUP. NZTS NEWS !!!!! New additition....Special Education 2000. Coakley Story. Tuberous Sclerosis ( TS ) is a difficult condition to explain because it effects people in many different ways. It is a complex genetic disorder affecting individuals with different degrees of severity. Some people with the disorder are totally unaffected and may go through life without the diagnosis ever having been made, because there have been no symptoms presenting themselves, and are only diagnosed when their child is found to have the condition. What is Tuberous Sclerosis?

30. Pediatric Oncall- TUBEROUS SCLEROSIS Problems of a child with tuberous sclerosis Information at www.pediatriconcall.com. TUBEROUSSCLEROSIS. Q4). Why does tuberous sclerosis occur? A4). http://www.pediatriconcall.com/forpatients/CommonChild/tuberous_sclerosis1.asp

Pediatricians Group Discussion Specialist Answers Share experience ... Doctors Corner TUBEROUS SCLEROSIS Q4). Why does tuberous sclerosis occur? Tuberous sclerosis is a genetic disorder (due to errors in the genes). Children have a 50% chance of inheriting tuberous sclerosis if one of the parents have this condition. However 2/3 rd of the cases are due to spontaneous genetic errors, the cause of which is still a mystery. Q5). How is a patient with Tuberous sclerosis diagnosed? A classical picture of Tuberous sclerosis is mental retardation, epilepsy and adenoma sebaceum. Depending upon the age of the child, the following tests are done:- Brain MRI or CT Scan. EEG( Brain Wave recording) Echocardiogram of the heart Ultrasound of the kidneys Eye examination Blood test to check renal functioning and anaemia From the above tests, your doctor will be able to tell you whether you child has tuberous sclerosis.

31. GeneReviews: Tuberous Sclerosis Complex Your browser does not support HTML frames so you must view tuberous sclerosisComplex in a slightly less readable form. Please follow this link to do so. http://www.geneclinics.org/profiles/tuberous-sclerosis/

Your browser does not support HTML frames so you must view Tuberous Sclerosis Complex in a slightly less readable form. Please follow this link to do so.

32. National Library Of Medicine A list of synonyms, a summary and major features of tuberous sclerosis. http://www.nlm.nih.gov/cgi/jablonski/syndrome_cgi?term=tuberous sclerosis&fi

33. The Cardiff-Rotterdam Tuberous Sclerosis Mutation Database The CardiffRotterdam tuberous sclerosis Mutation Database. This Databaseis maintained from Cardiff, Institute of Medical Genetics http://www.uwcm.ac.uk/uwcm/mg/tsc_db/

The Cardiff-Rotterdam Tuberous Sclerosis Mutation Database This Database is maintained from Cardiff, Institute of Medical Genetics, and is a locus specific database. It contains published mutations and polymorphisms in the tuberous sclerosis TSC2 gene, as well as prepublished data from participating centres. Where available clinical details will be provided. We hope this initiative can speed up communication in the field. This database is freely accessible, and data should not be used for publication, replication or reproduction by any means, without written permission of the coordinators. Permission will usually be granted if a proper reference to the database is provided. Contributions from other centres will remain possesion of the contributor and will carry an appropriate reference. Groups interested in actively participating are asked to fill in the comment form further down this page. There are three groups of mutations: Gross Deletions/Insertions Micro-Mutations 3. Polymorphisms, which will be added at a later date. There is a submission form which can be used to send mutation data to the database curators.

34. Tuberous Sclerosis Complex; Congressionally Directed Medical Research Programs ( FY02. tuberous sclerosis Complex Research Program Fact Sheet. TuberousSclerosis Complex Search Awards Funding Opportunities. CDMRP http://cdmrp.army.mil/tsrp/

Congressional Appropriations for Peer-reviewed Research $1 million in FY02 $2 million in FY03 Funding Summary Anticipate two or three awards in FY02 Tuberous Sclerosis Complex Research Program Fact Sheet Tuberous Sclerosis Complex Search Awards Funding Opportunities ... Publications Last updated March 12, 2003 (jls)

35. Fact Sheet: TSRP Fact Sheet; Congressionally Directed Medical Research Programs DEPARTMENT OF DEFENSE tuberous sclerosis COMPLEX RESEARCH PROGRAM. 2 tuberous sclerosisis a genetic disorder that can affect any or all systems of the body. http://cdmrp.army.mil/pubs/factsheets/tsrpfactsheet.htm

January 31, 2003 FACT SHEET DEPARTMENT OF DEFENSE TUBEROUS SCLEROSIS COMPLEX RESEARCH PROGRAM ARMY POSITION: The U.S. Army Medical Research and Materiel Command (USAMRMC) manages biomedical research programs that are part of the U.S. Department of Defense (DOD) and Army budget submission. In addition, as directed by Congress, the USAMRMC manages congressionally targeted biomedical research programs. One of the congressional research programs managed by the USAMRMC Office of Congressionally Directed Medical Research Programs (CDMRP) is the Tuberous Sclerosis Complex Research Program (TSCRP). The TSCRP supports research directed toward a better understanding of the role and function of proteins produced by the tuberous sclerosis complex 1 (TSC1) and TSC2 tumor suppressor genes, in accordance with the directives received from Congress. KEY FACTS: Tuberous sclerosis is a genetic disorder that can affect any or all systems of the body. Tuberous sclerosis affects as many as 25,000 to 40,000 individuals in the United States and about 1 to 2 million (M) individuals worldwide. Congress directed the DOD's involvement in the TSCRP in fiscal year 2002 (FY02).

36. The National Tuberous Sclerosis Association A Letter to Mick from Rose Chodzinski a tuberous sclerosis victim. Mickmeets Sclerosis. The National tuberous sclerosis Association. It http://www.goals.com/transrow/ntsa.htm

A Letter to Mick from Rose Chodzinski a Tuberous Sclerosis victim. Mick meets 10-year old Dadianna Westall, a victim of Tuberous Sclerosis. The National Tuberous Sclerosis Association It wasn't very long ago that I had never heard of tuberous sclerosis. Then one evening, my wife and I were invited to dinner by Frank Westall, a friend and sponsor of Trans-Oceanic. When introduced to his family, I met Dadianna, his 10-year old daughter who had tuberous sclerosis. An obvious relationship developed between Trans-Oceanic and Frank's local support group. It is an honor to be able to support and help The National Tuberous Sclerosis Association achieve their goal: (1) to increase awareness of tuberous sclerosis, and (2) to find the cause and cure for this dreaded disease. Trans-Oceanic's intention is to develop fund raising programs such as a 1-900 number that would follow the expedition's progress and a pledge-per-mile program where proceeds would go to the association. We are in the early stages of development, but are moving forward, so please keep posted. The following information is from a brochure provided by the NTSA.

37. The Contact A Family Directory - TUBEROUS SCLEROSIS printer friendly, tuberous sclerosis, tuberous sclerosis ASSOCIATION.tuberous sclerosis Association Little Barnsley Farm Catshill http://www.cafamily.org.uk/Direct/t45.html

printer friendly TUBEROUS SCLEROSIS home more about us in your area conditions information ... how you can help search this site Tuberous (swellings or enlargements) sclerosis (the hardening of an organ or tissue) is a complex heterogeneous genetic disorder which may affect many of the body systems. Typical manifestations occur in the brain, skin,eye, heart, kidney, bones, lungs and intestine. Characteristic features include: in the brain, calcified growths which show on a CAT scan on the skin, hypomelanic (white) patches on the face, butterfly shaped rash, angiofibromas (adenoma sebaceum) on the forehead, fibrous plaque on the lumbar area, a shagreen patch (thickened and discoloured skin) in the kidney, cysts or angiomyolipomata (benign growth) in the heart, rhabdomyomata (benign growth of heart muscle) Epileptic seizures occur in 75% of cases, while some degree of learning difficulty occurs in 50% of cases. Additionally, behaviour problems and autistic tendencies are common features of the condition. However the condition is very variable in the severity and diversity of the presenting manifestations in individual cases. It is possible to have the condition while presenting with only one characteristic feature. Inheritance patterns Autosomal dominant inheritance with variable expression and reduced penetrance. It was thought that sporadic mutations accounted for 70% of cases but detailed family histories, examinations and tests on first degree relatives show that sporadic mutations account for 50% of new cases. It is therefore important to establish the family history prior to genetic counselling.

38. Tuberous Sclerosis (Bourneville Disease) tuberous sclerosis (Bourneville disease). autosomal dominant phakomatosisclassic triad seizures, retardation, adenoma sebaceum http://chorus.rad.mcw.edu/doc/00403.html

CHORUS Collaborative Hypertext of Radiology Multisystem entities Feedback Search tuberous sclerosis (Bourneville disease) autosomal dominant phakomatosis classic triad: seizures, retardation, adenoma sebaceum calcified subependymal hamartomas uncalcified tubers in cerebral cortex enhancing lesion ==> malignant transformation to giant cell astrocytoma associated with: skin lesions angiomyolipoma increased risk of renal cell Ca Charles E. Kahn, Jr., MD - 8 July 1995 Last updated 14 March 2001 Medical College of Wisconsin

39. Skin Lesions Of Tuberous Sclerosis skin lesions of tuberous sclerosis. adenoma sebaceum. Shagreen patches.periungual fibromata. ashleaf hypopigmentation. Charles E. Kahn http://chorus.rad.mcw.edu/doc/00404.html

CHORUS Collaborative Hypertext of Radiology Technical stuff / Miscellany Feedback Search skin lesions of tuberous sclerosis adenoma sebaceum Shagreen patches periungual fibromata ash-leaf hypopigmentation Charles E. Kahn, Jr., MD - 2 February 1995 Last updated 14 March 2001 Medical College of Wisconsin

40. Tuberous Sclerosis Complex tuberous sclerosis Complex. by Cheryl Howell. What is tuberous sclerosis Complex?Physical Symptoms. Genetic Analysis. Current Research. Other TSC Resources. http://biology.kenyon.edu/slonc/bio38/howell/tsc.htm

Tuberous Sclerosis Complex by Cheryl Howell What is Tuberous Sclerosis Complex? Physical Symptoms Genetic Analysis Current Research ... References What is Tuberous Sclerosis Complex? Tuberous Sclerosis Complex (TSC) was discovered in the 1880's by a French physician named Bourneville. TSC, also known as Bourneville's Disease and Epilola, is an incurable multisystem genetic disorder which can have a wide range of effects. Approximately one in 8,000 adults and one in 6,000 newborns are affected by TSC. Although TSC is often inherited, new mutations have been implicated in up to 75% of all cases ( TSA of Greece ). Males and females of equally likely to have Tuberous Sclerosis and the chance of passing it on to offspring is 50%. Physical Symptoms The physical symptoms of TSC which often lead to its diagnosis include hamartomaceous lesions of the brain, heart, kidneys, skin, lungs, and eyes, mental retardation, seizures, autism, fibromas of the finger and toenails, pitted teeth, and dermatological lesions. Three symptoms which constitute a positive diagnosis of TSC are seizures, mental retardation, and adenoma sebaceum, which are known as the clinical triad. People with TSC may exhibit only a few or many of these symptoms. Hamartomaceous lesions, or hamartomas, are tumour-like growths which are referred to as tubers. The most common tuber forms of the internal organs are cerebral hamartias and subependymal giant cell astrocytomas of the brain, rhabdomyomas of the heart, and angiomyolipomas of the kidneys (Kwiatkowski and Short, 1994 cited in Henske

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