Reach Out April 2019

TSA News
Farewell
Clare Stuart
feel both great pride and great sadness to be finishing my
I term as General Manager of Tuberous Sclerosis Australia
(TSA). I am grateful for the opportunity to make a difference
to the Australian tuberous sclerosis complex (TSC) community
through my volunteer and paid work for TSA. I can still
remember my first project for TSA when I was in high school.
I created our first electronic membership database in the early
1990s, including the task of typing hand written contact details
maintained by Lynn Wilson, the founder of TSA.
Being a big sister to Lizzie Pinkerton, who had TSC, was a
life-defining experience for me. It taught me first hand, not only
the challenges that TSC can bring to a family, but also the way that
TSA can have a positive impact on a whole community of people
living with TSC. I learnt much of this from my own mother, Sue
Pinkerton. While she was President of TSA, Sue shared her dream
of a TSA with paid staff, removing some of its reliance on volunteers
and helping the organisation to grow. It is wonderful that, before Sue
retired as President of TSA, we were able to make that happen. It was
an honour to become our first staff member in 2011.
Since then, TSA has been able to expand its information
and support services and engage with more people living with
TSC from more parts of Australia. We have been able to provide
accurate and balanced TSC information to thousands of people
and connect with a range of health professionals to improve their
knowledge of TSC. We have seen the first targeted medicines for
TSC become available and have successfully advocated for these
to be funded by the Australian government. We have been able
to increase our fundraising income and expand our fundraising
activities to involve more people in the community. This has
increased awareness of TSC and its effect on individuals and their
families. There is much more that we have on our to do list and I
encourage you to get involved in TSA’s activities and fundraising as
much as you are able to.
I have made many wonderful friendships through TSA and I
will miss the opportunity to speak to TSC families over the phone
and at TSA’s education events. I hope that I will still get to connect
with you, perhaps at a TSC Heroes event in the future.
Thank you to my family and friends for their support of my
work with TSA - to my husband Brendan, who made it all possible
while our children were very young, and to my sister-in-law,
parents and friends for many nights in their guest bedrooms to
keep TSA’s travel costs low. And a final thank you to all my friends
who have joined me in TSC Heroes events, offered their skills as
volunteers and supported Lizzie’s Lunch.
I am leaving TSA for personal reasons and this is only possible
because I know the organisation is strong and well governed.
TSA is safely in the hands of a dedicated and diverse management
committee and wonderful volunteers and staff, including our
untiring fundraising lead, Kate, who has been a wonderful
colleague and friend for the last two years.
I wish Jackie all the best in her role as the new General
Manager and look forward to what TSA will accomplish for
Australians with TSC under her leadership.
We’re Making a Parachute!
We are thrilled to share news that the nib foundation has
provided a major grant of $30,575 to TSA to create our
Parachute Pack, a new diagnosis resource for parents and carers.
This generous contribution, combined with the proceeds of our
2017 Christmas appeal, makes this project possible.
We’ve called it a Parachute Pack because it won’t prevent
families experiencing the free fall of a new diagnosis of TSC, but it
will provide the information, connections and hope they need to
navigate the early days.
We will be working on this important new information
resource during 2019. We have partnered with the Centre for
Community Driven Research to complete a research project with
20 families living with TSC to improve our understanding of what
happens when a child is diagnosed with TSC. The outcomes of
this, along with interviews with health professionals, will help us
to develop these new resources and ensure they are available when
people hear the words ‘tuberous sclerosis’ for the first time.
Thank you to all our families and health professionals
who have given their time to this project so far and to the nib
foundation for their partnership.
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