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I S S U E 1 2 0 • SU M M ER 20 1 2

Australia

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-

in Melbourne.

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

Carrie Elton

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

capital cities.

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.

IN THIS

issue

Page 1: A New Era Page 2: Page 3:

Page 4:

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,

NF Australia.

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


SPONSOR NEWS

Spotlight:

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.

donations.

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.


I S S U E 1 2 0 • SU M M ER 20 1 2

2013

coming up

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!

Directors

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-

industry.

opment@nfaa.org.au 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


4

NEWS & SUPPORT STATE COMMITTEES

NDIS UPDATE

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

TM

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

events etc.

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

Melbourne.

www.everyaustraliancounts.com.au

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

TM

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

activities.

Season’s Greetings & Happy New Year from the Directors & Staff of NF Australia

I’D LIKE TO YOU TO SAVE ON POSTAGE & RECEIVE MY NEWS BY e-News update Fax back to 02 9719 3575 or email us with your details on info@nfaa.org.au My name is: ........................................................................................................................................ My address is: .................................................................................................................................... My email is: .................................................................My phone no is: ............................................


NF Australia Summer 2012 Newsletter