| A successful information afternoon in Sydney |
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| Events - Past Events | |
| Written by Sue Pinkerton | |
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Recently, an information session was held at Sydney Children's Hospital by the ATSS medical advisors. It was a great success and Sue Pinkerton has written about the afternoon. TSC Information Afternoon Invitations were sent to all TSC affected families in the South Eastern Sydney and Illawarra Area Health Service, who had previously been seen by doctors at Sydney Children’s Hospital. Invitations were also issued by the Genetics department at Westmead Children’s Hospital. This TSC afternoon was an initiative of Dr. Mowat and Dr. Lawson who are the medical advisors of ATSS Inc. Twenty five people attended this informative afternoon. After an introduction by Sue Pinkerton, President of the Australasian Tuberous Sclerosis Society, Dr. John Lawson presented an overview of the manifestations of TSC. Dr. Lawson focused on the neurological involvement; tests used for diagnosis and associated treatments. The presentation was made even more interesting by the use of actual scans highlighting the presence of tubers and their placement in crucial areas of the brain. Audience interaction was encouraged and all those attending were able to ask questions during both presentations. Dr. David Mowat’s presentation was equally as interesting and informative. He explained the genetics of TS with a visual presentation which clarified the genetic information. David then went on to explain the MTor Pathway, again using very helpful diagrams. This knowledge about the proteins, associated with TSC on Chromosomes 9 and 16, Tuberin and Hamartin, as tumour suppressors is very exciting as it now gives researchers and scientists a greater field to work in. The discovery of the drug Rapamycin, which effectively reduces the angiomyolipomas in kidneys and lungs, was explained as a very possible treatment for many TSC affected people. Availability of Rapamycin for women with LAM is a real possibility in the near future as trials are already underway. Dr. Mowat also explained the possibility of genetic testing being available in Australia. At the conclusion of the presentations, those attending shared some afternoon tea and exchanged some aspects of their TS stories. There was certainly a great deal of enthusiasm and energy from those attending this information afternoon. Most people were keen to learn more about TSC at the ATSS Family Conference on 12th & 13th August, at North Rocks, Sydney. Appreciation and thanks were expressed to Dr. David Mowat and John Lawson for holding such an interesting and informative afternoon. |
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