Tuberous Sclerosis Australia are proud to announce Sue and Ross Pinkerton as life members of TSA. This award goes some way to acknowledging their amazing contribution over three decades to the Australian TSC community. At our annual fundraiser, Lizzie’s Lunch, we presented Sue and Ross with this award in the presence of their friends, family and TSA supporters.
In July 1984, Sue and Ross Pinkerton welcomed their daughter Elizabeth into the world. She was diagnosed as blind, and was having seizures. She was eventually diagnosed with tuberous sclerosis complex (TSC) and adult-type poly-cystic kidney disease. After learning about our organisation, Sue joined the committee and for nearly two decades led the organisation as President, a difficult and relentless job. She has been the driving force behind our work and has achieved so much. Under Sue’s leadership, TSA held seminar days that brought together health professionals, scientists, patients and families.
She built relationships with key medical doctors and demanded that they join our cause and address the many unmet needs of families with this condition. Sue brought families together at social gatherings, through personal introductions and through long phone calls into the night, answering their questions and being a shoulder to cry on. And for many years Sue edited our key publication, Reach Out, which continues to bring high quality TSC information into hundreds of homes around Australia.
We thank Sue and Ross for their 30 year commitment to TSA and their compassion, drive and determination on behalf of all the families across Australia who live with TSC.
There has been so much more to Sue’s role including recruiting, leading and motivating a team of volunteers, speaking at conferences, being in the media, raising awareness and, of course, fundraising to support the work of TSA and vital Australian medical research.
Sue has been supported by her wonderful husband Ross. Ross has helped in so many ways including speaking at TSA events about his experiences as Lizzie’s dad, being our returning officer at AGMs, reviewing documents and publications, setting up and packing up events and welcoming other dads into the TSC community. While Sue and Ross worked full time and were parents to five children, their work continued in supporting the TSC community.
We thought when Sue and Ross retired from TSA in 2012, after Lizzie passed away, that they would take a break from TSC. They certainly deserved it. But, since then, they have remained firm supporters of TSA. In the past year alone they have raised over $25,000 through Lizzie’s Lunch, fundraising shopping nights and inspiring their friends and family to get involved.
We thank Sue and Ross for their 30 year commitment to TSA and their compassion, drive and determination on behalf of all the families across Australia who live with TSC.
Read more about Sue’s contributions while President of TSA.
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