ATSS_ReachOut_April17_FINAL

TSA News
Thank you Sue and Hayley
Debbie Crosby
We have had so many wonderful and
dedicated volunteers who help run
and support Tuberous Sclerosis Australia.
I would like to thank Sue Williamson who
has stepped down as one of our Regional
contacts in Western Australia. Sue, who
has a daughter with TSC in her forties, has
volunteered with TSA for over thirty-five
years, from the very beginning when our
organisation began as the Australasian
Tuberous Sclerosis Society. She has helped
support many people with TSC and their
families, and helped plan conferences
and picnics in Perth. Sue was also very
involved with the planning and growth of
our organisation, with raising funds and,
from her perspective as a mother of a child
with TSC, has been a wonderful advocate
for other families. We wish Sue and her
family the very best in the future. Nicole
Stone continues in her role as regional
contact for Western Australia.
I would also like to thank Hayley
Hill who has stepped down from
the committee after nine wonderful
years. Hayley has made an amazing
contribution to TSA and has been
very supportive of our committee
and TSA members. After contacting
TSA when her son was diagnosed with
TSC, Hayley joined the management
committee. For many years, she did
all of our bookkeeping in her role as
Treasurer, she was our Membership
Secretary and helped to organise many
of our TSA educational and fundraising
events. She volunteered her precious
time while looking after her family and
working. Hayley was always there to
support TSA in any way she could and we
will miss her. I would also like to thank
Hayley for always supporting me, both as
Sue Williamson, Clare
Stuart and Hayley Hill
President and personally as a parent of a
child with TSC. We wish her all the very
best and look forward to welcoming her
back in the future as a volunteer.
Congratulations Dr Simon Harvey
Dr Simon Harvey, paediatric
neurologist at Royal Children’s
Hospital in Melbourne, is the recipient of
the 2016 Elizabeth Pinkerton Memorial
Award. This award is given annually by
Tuberous Sclerosis Australia to a health
professional in recognition of their
efforts to improve the lives of families
living with TSC in Australia. Dr Harvey
is the sixth recipient of this award and
the first from Victoria.
One father of a child with TSC
nominated Dr Harvey for this award, saying:
“Dr Harvey has spent many years
treating patients with TSC. More recently
he has been researching and documenting
the effectiveness of tuberectomies in
providing seizure control and reduction in
seizures as a result of the treatment.
He has been sharing his knowledge
of this condition and avenues of
treatment across the globe to support
and educate other practitioners.
This year Dr Harvey is working with
a team to understand DOTS (the
Developmental Outcomes of children
with Tuberous Sclerosis). The DOTS
study is underway.
To our family, Dr Harvey has been
a huge support and advocate who has
continued to push to provide our son with
the best quality of life possible. For this we
are forever grateful.”
Dr Harvey is a loved paediatric
neurologist to many children with TSC
and has been given the nickname “Uncle”.
He has also worked within the neurology
team at Royal Children’s Hospital to
evaluate other patients for possible
epilepsy surgery, including many patients
from interstate and overseas. Dr Harvey
has also supported TSA by assisting with
family educational events in Melbourne
and attending our medical education
meetings. He is a member of the TSC
Professionals Network.
We look forward to presenting Simon
with his award later this year in Melbourne.
You can read more about the Elizabeth
Pinkerton Memorial Award and the
previous recipients at www.tsa.org.au/
about-us/epma
Simon and colleagues
Nominations
open
Do you know a health professional
who has gone above and beyond to
improve your life or the life of your child?
Take five minutes to nominate them at
www.tsa.org.au/about-us/epma. This
year, we’d particularly like to know
about health professionals who
treat adults with TSC.
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