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NF NEWS Generously supported by Thorn
A NEW ERA FOR MEMBERS AND SUPPORTERS In 2013 NF Australia will have a focus on new ways of engaging and encouraging many more to be part of the NF community. A key goal of NF Australia is to support all those impacted by NF. If the statistics are correct and
Professor Kathryn North to head the Murdoch
one in 3,000 people have some form of NF,
In February 2013 Professor Kathryn
in Australia being around 2.3 there are about
North will take up a new role as Direc-
16,000 people who either have the condition or
tor of the Murdoch Children’s Institute
are in a family with someone who has the con-
dition. Given that we have only a few hundred
Professor North will maintain her involve-
members then building our supporter base and
it was agreed that the NF community could be
ment in the research in Neurofibromatosis
growing membership must be a priority. In-
better served by waiving the annual subscription
creased membership numbers will also provide
for ordinary members from 1 January 2013. If
more clout in lobbying governments.
by removing even small barriers to membership,
at The Children’s Hospital at Westmead, and the Clinic will continue with 7 senior
there are about 7,000 people with the condition in Australia. With the average family size
physicians with strong expertise in the
There are a number of reasons why people do
clinical care of patients with NF.
not join member organisations, including finan-
She will also maintain her involvement as an
cial constraints. We know that many of those
such as fees, the organisation is able to attract a greater membership that will be a positive outcome.
impacted by NF are also impacted financially.
A high priority identified by the organisation is the
While there are many who don’t mind paying
placement or funding of qualified NF Support Of-
membership fees and can easily afford to do so,
ficers in, or close to, Children’s Hospitals around
there are some families who really struggle to
Australia who will often be the initial point of con-
NF Australia looks forward to continuing its
find the money to pay for membership on top
tact with young families or others first diagnosed
close relationship with Professor North in her
everyday living costs and, for country people in
with NF. The last thing we would want is for one
new role in Melbourne.
particular, the costs of travel and accommoda-
of our support people to meet with an individual
tion to take their children to hospitals in the
or family impacted and then have to say “we
would like to help / support you but you need to
active collaborator in many of the national and international research programs and as a member of the Scientific Advisory Board.
Page 1: A New Era Page 2: Page 3:
Professor Kathryn North moves to the Murdoch Radio Rentals News Dreamnight at Taronga New Hospitality Training Program What’s Coming Up State Committees NDIS Update Facebook
After consideration by the Board of the minor
pay to join our organisation first”.
budgetary impact of waiving membership fees
Visit www.ctf.org.au for information on joining
versus the potential positive social outcomes,
By removing even small barriers to membership such as fees the organisation may be able to attract a greater membership.
Finally, we encourage all of those who can contribute financially to do so by becoming supporters through our donor programs, including regular giving. With best wishes for the festive season and the new year
SUITE 2 84 VICTORIA RD DRUMMOYNE NSW 2047
N FA A . O R G . A U
N EWS F RO M OUR FO UN D I N G SP ONS O R During November and December penguins are helping Radio Rentals and Rentlo to raise a whopping $27,000 for the Children’s Tumour Foundation of Australia as stores around Australia sell our penguin merchandise as part of their national sponsorship.
The partnership with Radio Rentals and Rentlo
In August the Thorn Group head office staff
The store manager said “We’ve had a lots of
provides a great opportunity to raise awareness
manned a Saturday promotion at Merrylands
fun supporting our charity.”
of NF and funds to make a difference, with
Mall in Sydney selling $2,000 of merchandise,
the two-year sponsorship including cash plus
and recently the Belconnen store undertook a
a range of innovative and appealing activities
four-day fundraising activity in the Belconnen
nationally and locally to benefit those impacted
Westfield Mall to sell CTF products and attract
by NF no matter where in Australia they live.
In addition to the sale of the Foundation’s
They arranged for CTF banners & decked out
penguin merchandise, Radio Rentals stores are
the kiosk with balloons and streamers. After
being encouraged to pursue further engage-
raiising over $660 the staff are looking to do
ment by identifying projects within their local
more in the coming weeks. They attracted a lot
community for funding, encouraging
of interest in the kiosk and report that CTF is a
schools or service groups to participate, or
great ‘stopper’ for people who would not have
speak to key community members.
normally stopped at the Radio Rentals kiosk.
Another great example of the commitment Radio Rentals staff have to making a difference is Alan McKinlay, the Sales & Operations Manager for Radio Rentals Vic Metro West, and a team from Radio Rentals in Victoria who are fundraising for the CTF in January 2013. Alan reckons they must be a bit crazy, but the team of 10 are tackling the Tough Mudder challenge and it’s all about raising money for the Children’s Tumour Foundation of Australia. The Tough Mudder is a hardcore 20km obstacle course designed by British Special Forces which tests all round strength, stamina, mental grit and camaraderie. It includes 12 foot walls, underground mud tunnels, fire, ice, more mud and 10,000 volts of electricity. Alan and the team say that their training for this event and one day of taking on 20 kilometres of mud, fire, ice and 10,000 volts of electricity pales in comparison, as they are the lucky ones who do not have any form NF. You can see how the team is going and support them to reach their goal of $5,000 by making a donation at http://www.everydayhero.com.au/radiorentals-toughmudder
Watch out for news on the involvement of
Radio Rentals Store promotion at Belconnen Mall ACT
more Thorn Group companies in 2013.
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DREAMNIGHT AT THE ZOO
Feb 10 Cupid’s Undie Run- Sydney
On Thursday 6 December 10 lucky families had great fun at Taronga Zoo’s annual Dreamnight
For more information about this new Valentine’s Day fundraising event go to www.cupidsundierun.org.au
As well as the animal displays and shows, the
May 31 Black & White Gala Dinner,
Zoo was teeming with Star Wars characters,
Four Seasons Hotel, Sydney
Wiggles and dinosaurs. A fantastic time was had by all the children. Thanks to Taronga Zoo
Visit ctf.org.au for the latest news and events
for including the Children’s Tumour Foundation on the invitation list, and their fantastic staff and volunteers for putting on a wonderful event.
Who’s Who at NF Australia
We can’t wait for next year!
HOSPITALITY TRAINING PROGRAM NF Australia will be teaming up with Tourism Training Australia to facilitate a Hospitality Training Program for 15 young people with NF in the first half of 2013.
The project is funded by a grant from the QBE
The 8 day program covers a wide range of
If you are interested in a career in hospital-
skills and experiences. On completion partici-
ity this is a great opportunity and entry point
pants will receive a Certificate of Attainment
to the industry! To put your name on the list,
and assistance in gaining employment in the
email Noeleene at the national office on devel-
firstname.lastname@example.org or phone 02 9719 3356.
Foundation. The dates are yet to be scheduled but we are now seeking Expressions of Interest to participate. You will need to be 18 years
of age due to RSA requirements.
snippets • We recently welcomed two new faces to the National Office
Allison Maher is our part-time National Sponsorship & Fundraising Manager and Noeleene Yap has joined us as Marketing & Administration Officer. Thanks to Tony Parkin from Consultus who undertook the search and recruitment on a pro-bono basis.
• Take a look at our new Shopping Centre Display counter and banners to the right.
• Festive Season Office Hours - the National Office will not be physically
manned during the Christmas holidays from 24 December until 2 January. Email will be checked regularly and the office phone will have a message with contact details for urgent matters
John Hughes (Chairman) Geoff Bottom Winston Chiu Brad Dowling Bill Ellerton Maria Foundas Nirmal Hansra Rosa Pirecca Catherine Strassberg
Staff Carrie Elton CEO
Allison Maher National Sponsorship & Fundraising Manager-
Noeleene Yap Marketing & Administration Officer
NEWS & SUPPORT STATE COMMITTEES
We are now ready to establish our first State Committee working to support NF Australia in Victoria.
After a long fight the NDIS will become a reality.
The board has approved a DRAFT policy which
National Disability Insurance Scheme in full after
sets out the roles and responsibilities of State Committees. It is very much a working document feel our way forward.
We congratulate those who have campaigned
Some of the primary responsibilities of the State
hard to achieve this outcome in NSW. John
grow our membership numbers, organising local
Barry O’Farrell announced a funding agreement for the scheme.
programs at the State and local level, helping to
OUR SPONSORS & SUPPORTERS
Prime Minister Julia Gillard and NSW Premier
which will be refined over coming months as we
Committees will include supporting national
You can still order your penguin merchandise to fundraise for us! Order forms are available at ctf.org.au
NSW will become the first state to introduce the
Della Bosca who is heading the campaign cautions that only when there is a funding agreement for the NDIS in every state and territory
will we truly be on our way towards making sure
Bill Ellerton who will chair the Victorian State
carers receive the support they need, when they
Committee is now looking for 4-5 people to join the Committee. It is anticipated there will be
all Australians with a disability, their families and need it.
monthly meetings in the evenings in or around
You can find out more about the scheme at
If you are interested in helping out and are able to devote the time and skills, please drop Bill a note or call him on 0458 377 351. All appointments to State Committees will be formally approved by the board based on the
recommendation of local committees. Our plans are to establish Committees in other States in 2013 partly based on the experiences in Victoria
GET CONNECTED Get connected and join the NF Australia Facebook Group to connect with the NF community in Australia. Go to Facebook and search for Children’s Tumour Foundation (NF Australia) and ask to join the closed group. The Group is growing every day, and is proving to be a great connector - you can find individuals and families in your local area, link with others who are experiencing the same issues are you, or just catch up on social
Supported by NSW Health
Season’s Greetings & Happy New Year from the Directors & Staff of NF Australia
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Newsletter of NF Australia - the Children's Tumour Foundation of Australia