Annual report 2014-15-Final

With your help we...
Education and Support
Directly helped more than 80 families through
our phone and email support service.
It really made my day talking to
someone who knows the struggles that
go along with living with TSC. I want to
thank you for taking the time to call me
and reach out to me, I am truly grateful
for your call. You have reminded me
that I have lots of options to choose
from when it comes to pregnancy and
children and ultimately, a family.
- Jodi, who has TSC
Held the first TSC meeting in New Zealand
and launched Tuberous Sclerosis Complex New
Zealand, our new partners for tackling TSC in
Australasia. 48 people came to the two day
meeting and four new TSC educational videos are
available online.
To be a well informed, connected and
supported TSC parent is the best gift we
can give our TSC affected children.
- Hannah, whose child has TSC
Published the 100th (and 101st) issue of Reach
Out, our magazine that provides up to date
TSC information and shares the challenges and
triumphs of living with TSC.
With a son with TSC, it was great to have
him here to learn as a family what he has,
how to work with it and how to get on
with life.
- Andre, whose adult son has TSC
Tuberous Sclerosis
Australia
4
Held educational events for medical specialists
and families in Sydney and Brisbane with a focus
on best practice for managing TSC kidneys.
Expanded our information resources, adding
new information on managing the financial
aspects of TSC, using facebook for TSC
information and support and the new TAND
checklist for recognising the learning, behaviour
and mental health impacts of TSC. We’ve also
updated several of our information pages
to reflect new treatment and management
guidelines.
Hosted global awareness day picnics around
Australia giving local families a chance to connect
and share their experiences with TSC.
Facilitated peer support through our active
facebook discussion group. The group has more
than 324 members and more than 300 topics
were discussed during the year.