Reach Out April 2019

TSA News
Editorial
Teresa Llewellyn-Evans
This issue of Reach Out is full of both
endings and beginnings, and reminds
me of the Roman god of transitions, Janus,
who is often depicted looking both to the
past and to the future. I’ve always found
that idea interesting, but it may just be
because I am born in January, the month
named after Janus! We’re looking back at the
projects that came to fruition at the end of 2018
after many months and even years, and look forward
to what we can achieve through new opportunities and
partnerships and continuing to connect with each other through
various TSC events this year. Debbie Crosby sums these up for
us in her president’s report on page 4.
Our lead story is the breakthrough decision by the Federal
Government to add everolimus (Afinitor) for epilepsy to the list
of subsidised medicines. This is a life-changing decision for many
people living with TSC as most would struggle to pay for this
medicine themselves. Read more about this amazing result on
page 8, including the difference it has made for one family (see
Emily’s experience of everolimus for epilepsy by Emily’s mum, Dawn
on page 8.)
In December we launched A Little Book About TSC, a new
picture book that helps explain TSC to younger children with
TSC, their siblings, friends and classmates. Read more about it on
page 10 or order a copy today to share with your child’s teacher.
Our Just Between Us stories, starting from page 14, focus on
the time of diagnosis. Three parents look back at the time when
their child was diagnosed with TSC and what this meant for them
and their family and friends. They also share what they most
look forward to. Miriam shares her story of her son Caleb’s TSC
diagnosis in He definitely doesn’t have it; Dawn shares the story of
her daughter Emily’s TSC diagnosis in She was my third child so I
thought I knew what to expect; and Jeremy shares his son Oliver’s
TSC diagnosis in Something has been found on the scan.
Looking forward, Tuberous Sclerosis Australia (TSA) will
be developing a Parachute Pack, a new diagnosis resource that
will make a tremendous difference for newly diagnosed parents
and carers. This is thanks to a generous new
partnership with the nib foundation, together
with the proceeds of the 2017 Christmas
appeal. Read about this in We’re making a
parachute on page 7.
Clare Stuart synthesises some of the issues
that emerged in the “Understanding TAND*”
events with Professor Petrus de Vries last year and
looks forward to the future for TAND (see page 20
to read this article and for links to the TAND checklist
screening tool information page and other helpful resources).
And we have all our usual features. Read more about the small
victories our individuals with TSC make every single day (see
Celebrations on pages 12-13). Our fundraising snapshot highlights
some wonderful achievements of our TSC Heroes and looks
forward to new opportunities in 2019 (see page 22). All highlight
partnerships which continue to make a difference to TSA’s work
and demonstrate that you can have fun too! And what a difference
you can make by just spreading the word about TSC to your
friends and work colleagues.
An ending I am particularly saddened by is farewelling our
General Manager, Clare Stuart. Clare has had made such an
amazing contribution to the TSC community over many years
in many capacities. Read more from Clare herself on page 7. I am
sure you would agree that TSA has been truly blessed to have had
her working for us.
Looking forward we welcome Jackie Gambrell as our new
General Manager. Read Jackie’s story on page 6.
I look forward to continuing to share the stories that matter to
you in your journey with tuberous sclerosis complex (TSC).
*TAND stands for tuberous sclerosis associated
neuropsychiatric disorders.
Reach Out Official Journal of Tuberous Sclerosis
Australia, Inc.
18 Central Rd, Beverly Hills NSW 2209
Telephone: 1300 733 435
Website: www.tsa.org.au
Email: info@tsa.org.au
ABN 20 681 174 734
Incorporation no. Y 07116-42
Registered Charity CC25313
Reach Out Editor: Teresa Llewellyn-Evans
reachout@tsa.org.au
Disclaimer
The opinions expressed in this journal are those of the
authors and are not official pronouncements of TSA Inc.
Permission
Permission must be sought from the authors or publishers
to reproduce in any way articles or information contained
in this journal. Once permission is received the source must
be acknowledged.
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