Tuberous Sclerosis Australia Reach Out Magazine October 2016

TSA News
TSA News
President’s Report
Debbie Crosby
Welcome to another fantastic issue
of Reach Out. I would firstly like to
thank our general manager Clare Stuart for
the outstanding work she has done on Reach
Out. We are currently trying to recruit a
volunteer as editor of Reach Out. Clare
has stepped up and not only edited the past
two issues of the magazine but she has also
researched and written articles for the issues.
If you or someone you know would like to
volunteer as editor please contact us.
This past financial year has been a
very successful year for TSA and we are
looking forward to the future. At our
AGM in September we celebrated our
accomplishments and discussed our future
plans for the organisation. I would like
to thank all of our committee members
who commit their time to support, advise
and work for TSA. I would also like to
acknowledge our regional contacts who are
always willing to help support people living
with TSC and their families in their state.
Without this group of committed people
TSA would not be able to achieve its vision
to connect, inform and empower people
affected by tuberous sclerosis complex as
we work towards a cure for TSC.
Our longest standing regional
contact, Sue Williamson in Perth, has
decided to step down from this role. Sue
has contributed to TSA for over twenty
years, supporting many families around
Western Australia, assisting with TSA’s
events in Perth, fundraising, and providing
valuable feedback to the TSA Management
Committee and staff. Sue continues to
represent TSA on the board of Genetic and
Rare Diseases Network (GARDN) and
assists with other TSA projects. In recent
years Sue has shared the role of regional
contact with Nicole Stone and Nicole will
continue in this role. Thank you to Sue for
your huge contribution to TSA.
Our focus this past year has been on
fundraising, to ensure we can support all
of the goals in our strategic plan and to
grow our organisation. I would like to
welcome Chelli Edri, our new fundraising,
communications and events manager
to the organisation. We look forward to
working with Chelli and achieving our
fundraising goals.
It has been amazing to see so many
people from our TSC community raising
much needed funds and awareness of TSC.
I would like to thank and acknowledge
the outstanding fundraising efforts of our
TSC Heroes from all around Australia. A
big thank you to Miranda King and her
family and friends from Brisbane, who
raised over $8,000 from their trivia night.
A spectacular effort!
Many of our TSC Heroes also put
their bodies on the line and train hard
for fun runs and triathlons. Thank
you to Belinda who ran the City to Surf
in Sydney, and with the support of her
employer raised over $1,500. Thanks
to Isabella and Wesley who raised
$1700 in the Bridge2Brisbane run. And
in Perth, Annabel and her team raised
$1400 at the HBF Run for a Reason event.
It was great to see all of you with your
TSC Heroes t-shirts representing TSA.
We also look forward to supporting Jeff
and Elliot in the Western Sydney Half
Marathon that will be held in November.
Last time their amazing group of friends
and family raised over $40,000. Good
luck and we will be cheering you on. To
learn more about the TSC Heroes and
upcoming events check out our TSC
Heroes Facebook page.
The third annual Lizzie’s lunch
raised over $16,000 and each year it just
gets better and better. Thank you to the
Pinkerton family who help organise this
event and to their family and friends
for their ongoing support of TSA. If
you would like organise an event please
contact us at info@tsa.org.au
Our focus this past year has been on fundraising,
to ensure we can support all of the goals in our strategic
plan and to grow our organisation
The TSA committee and I are very
proud of the amazing effort and energy
people living with TSC and their families
go to in supporting our organisation.
Giving back and supporting our TSC
community helps TSA support all of our
members and their extended families.
Introducing Chelli
Chelli Edri joined TSA in June 2016
as our part-time fundraising,
communications and events manager.
After a successful career in sales and
marketing, Chelli comes to TSA with
experience in design and publishing
and a drive to apply her skills to help
families living with TSC. Chelli has
a BFA in photography, works as a
professional photographer, and has postgraduate
qualifications in advertising
and marketing.
Chelli is also a single mum to 3 year
old Ariela who was suspected of TSC at
birth however not formally diagnosed
with TSC until June 2015.
“Having a child with TSC is one of
the scariest things that has ever happened
to me. It has been a lonely journey,
as I haven’t had the luxury of having
someone by my side throughout the
many hospital visits and during decision
making times. Having a child with TSC
suddenly means you are not only caring
for someone, you are also making health
decisions that could potentially affect
the rest of their lives. Having a child with
TSC, also puts me in a unique position
of really understanding what the carers
of children with TSC go through and, I
hope, will make me a better fundraiser.
I didn’t find TSA until quite late in our
TSC journey. I am passionate about raising
the public profile of TSA so more families
are introduced to TSA as soon as TSC is
suspected. I believe strongly in the work that
Tell us what you think
As we grow TSA, we need your help. We
want to know what you think about
TSA’s work, the way we communicate with
you and how we fundraise.
Farewell Sienna
The Goong family in Queensland said a sad
goodbye to Sienna Tamara Goong, known
as “CC” on 19th July. Sienna was only 10 years
old and her death was due to complications of
tuberous sclerosis.
From Tamara, Sienna’s Mum: “Our
beautiful CC learnt to fly. She was surrounded
by her loving family and went peacefully.
Sienna has fought a tough battle and was always
so brave. She had a fighting spirit. We will
cherish our memories and always feel so grateful
for her love.”
Thank you to Sienna’s family and friends
for donating in her memory to both TSA and
Redlands Special School. Over $1500 was
donated to TSA as a tribute to Sienna’s life.
Everyone that fills out the survey online
and provides their contact information
will go into a draw for a double pass to
the cinema of their choice.
TSA does and I hope to be able to support
community fundraisers as together we raise
money to support the TSC community and
ultimately find a cure.”
To get involved with fundraising for
TSA, please contact chelli@tsa.org.au
Fill in the survey now at
www.tsa.org.au/survey
Reach
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