| Sue Pinkerton |
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Fortunately early contact was made with the fledgling support group, ATSS and after receiving information and meeting others with TS Sue and Ross became regular attendees at AGMs and picnics. Sue joined the committee in 1986 and was elected President in the early 1990's and held this position for 8 years. During most of this time as President she also edited the journal Reachout. Sue developed the concept of ATSS family weekends and arranged, organized and facilitated these conferences. Working with dedicated members of the committee Sue initiated a variety of fundraising events from the extraordinary Trivia Night to Theatre Nights; a number of the ATSS executive attended International TS conferences and links were further developed with overseas TSC support groups; ATSS joined the technology age and was one of the first support groups to develop a web site. Sue was the contact person for families and those newly diagnosed needing information about Tuberous Sclerosis. Sue regularly addresses community groups and university students to raise awareness of Tuberous Sclerosis. None of this would have been possible without the support and commitment of her family. Meanwhile, Sue was Lizzie's advocate for support and coordinator of all her medical needs. Lizzie is severely affected by TS having intellectual, visual, hearing and communication impairments, uncontrolled epilepsy and poly cystic kidney disease. Lizzie attended a special school for 14 years and received a wonderful functional education; she is now at an ATLAS (Adult Training Learning and Support) day program. Lizzie has had numerous medical problems over the years and Sue has experience with a wide range of treatments including Naturopathy and Homeopathy and mainstream medicine. |
Sue and Ross Pinkerton have 5 children and their middle daughter Lizzie has Tuberous Sclerosis. Sue works fulltime as a teacher of the Deaf for The Royal Institute for Deaf & Blind Children. Lizzie was diagnosed at 7 months old in 1985. | Next > |
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