NF NEWSA GALA RESULT TO END MAY AWARENESS MONTH

For the diary

ISSUE 122 • WINTER 2013

NF Awareness Month came to a six-figure close with the Black & White Gala Dinner on Friday 31 May. This year the premiere fundraising event for NF raised more than $140,000 towards support and research.

Held at the Four Seasons Hotel Sydney

330 guests from the big end of town

and NF Australia members joined spe-

cial guest MC Australian Logie Award

winning actor Rob Carlton (Underbelly,

Paper Giants) for plenty of laughs and

entertainment throughout the night while

enjoying a fine dining experience and

opening their pockets and their hearts

for the Foundation’s biggest annual fund-

raising event.

Many guests made generous pledges on

the night. The unique Penguin Raffle was

back with the $100-a-penguin tickets

quickly selling out! The prize for the

lucky winner, which was drawn by special

guest Kathy Armstrong, was a stunning

three-piece diamond and gold jewellery

set valued at more than $13,000, donat-

ed by John and Robyn Hughes.

Thanks to our generous sponsors the si-

lent and live auctions also provided great

prizes. There was spirited bidding on

items ranging from romantic getaways

at home and abroad to home furnishings

and appliances, exquisite pieces of jewel-

lery, artworks and sporting memorabilia.

The evening started with a moving video

produced by BCM Advertising telling the

story of some of our NF heroes and their

families. For many guests this was their

first introduction to Neurofibromatosis.

Later in the night two small heroes

joined Rob Carlton on stage to captivate

the audience - four year old Chantelle

Williams-Moss with her mother Karla

Williams and Katie Alford who enjoyed

last year’s event so much she returned

with mum Alison to celebrate her sixth

birthday at the dinner, complete with

a one-of-a-kind penguin birthday cake

kindly provided by Radio Rentals. The

next morning saw a trip to Taronga Zoo

for the girls and their families with CEO

Carrie Elton.

Take a look at the photos of the night

and our sponsors in the insert in this

newsletter or online at http://www.

nfaa.org.au/get-involved/events/black-

white-gala/gala-dinner-2013/

SUITE 2 84 V ICTORIA RD DRUMMOYNE NSW 2047 CTF.ORG.AU

Australia

Generously supported by Thorn

24 AUGUST

Gippsland NF Support Group Lunch

More information p.3

http://www.ctf.org.au/get-involved/community-events/gippsland-vic/

13-15 SEPTEMBER

2013 Family Camp

Myuna Bay Sport & Recreation Centre

More information p.7

http://www.ctf.org.au/get-involved/member-events/annual-family-camp/

25 OCTOBER

Dining with Daisies Gala Dinner

Hilton on the Park, East Melbourne

www.ctf.org.au/get-involved/events/

9 FEBRUARY

Cupids Undie Run

http://www.ctf.org.au/get-involved/events/about-cupids-undie-run/

Send us your event for listing here!

Above: NF Heroes Katie Alford (l) and Chantelle Williams-Moss (r) with Rob Carlton.

Katie and Chantelle meet Jarrah the Quokka at Taronga Zoo

From the CEO Penguins and Daisies make a Difference for NF

NF News is published by the NF Australia t/as The Children’s Tumour Foundation of Australia

Contact us:The Children’s Tumour Foundation of AustraliaTel: +61 2 9719 3356Fax: +61 2 9719 3575Email: development@nfaa.org.auWeb: www.ctf.org.au

Editorial and Graphic Design:Carrie Elton, Noeleene Yap

If you would like to make a donation or leave a bequest to the The Children’s Tumour Foundation please contact Carrie Elton, CEO on 9719 3356 or email info@nfaa.org.au

NF NEWS IS PROUDLY SUPPORTED BY RADIO RENTALS - RENTLO

Contents

02 NF News

Liz Kernohan Conference Centre opens 3

Bos taurus genome 4

Treating man’s newest best friends 6

A global conservation movement 7

Dog genome helps us understand human diseases 8

pets at Northcott 9

Developing rural veterinary skills 9

Profiles 10

Facultyevents 11

Thanks to our members and

supporters who are doing an excellent

job bringing NF awareness to their

communities by purchasing the

CTF merchandise boxes. Each box

contains a variety of daisy key chains

and penguin pins that can be sold at

the workplace, at a special event, in

schools or simply to family and friends.

Displaying the merchandise alongside

information about NF is a great way

to raise awareness. Kristie Williams set

up this eye-catching display (pictured

above) in her local pharmacy.

Complete with bright yellow balloons,

there is no doubt her bright display

helped to create an awareness of NF in

her community.

Although NF Awareness Month is

over for 2013, raising awareness and

support for NF doesn’t have to stop.

The CTF merchandise boxes are a

great way to spread the word about

NF and, along with our penguin plush

toys which retail for $20 each, can be

purchased for $50 per box from the

national office all year round.

To purchase CTF merchandise

download the Merchandise Order

Form from our website or phone the

office on 02 9719 3356 to place your

order. Keep an eye on the website for

online merchandise purchasing which

is coming soon.

New and updated Fact Sheets are being prepared - so keep an eye on the website over the coming months for downloadable information and resources and news about research at home and abroad.

Page 1: A Gala ResultPage 2: Message from the CEO Penguins and Daisies - making a difference Page 3: NF1 Patient Registry Gippsland NF GroupPage 4: NF Walks Page 6: Radio Rentals get the May Spirit Mid-North Coast Week endsPage 7: Fundraising - Everyday Heroes -Racing 4 NF NF Family Holiday Offer 2013 Family Camp - Page 8: Our Supporters Support Group contacts In Memory

IN THIS issue

On the evening of Sunday 12 May I

was able to represent NF Australia

at the Children’s Hospital Westmead

annual thank-you to donors held at the

Art Gallery of NSW. I was delighted

and proud that on the night the

contributions made by the organisation

over the years were recognised with

a special award presentation by Dr

Nigel Clarke naming NF Australia as a

Benefactor of the Hospital (pictured

above left).

I would like to thank all the members

and supporters who took up the call to

raise awareness of NF during May.

In this issue you’ll read about two

successful NF Walks held in different

parts of Australia - one in Townsville

and the other in Broken Hill. We have

all the resources available to help you

organise a Walk in your community.

The NF Walks have become a key

national fundraising program for the

CTF in the USA, which we hope to

replicate in Australia. NF Walks can

be held at any time of the year. If

you’d like to hold one, give Noeleene a

call in the National Office, who will be

happy to help you get started.

Thanks to all of our sponsors and

corporate partners for their support.

Radio Rentals and Rentlo along with

the Thorn Group provide us with

cash and staff support nationally,

and great enthusiasm for the cause.

Pro bono support from Freehills,

Crowe Horwarth and Consultus

provides much needed professional

services at no cost and our wonderful

event sponsors who provide critical

fundraising support. (You can see all

our Dinner sponsors and some images

from the event on the enclosed insert.)

How you can participate in the NPR1

Anyone with a diagnosis of Neurofi-

bromatosis Type 1 is eligible to register

and complete the 30-minute online

NPRI questionnaire. To participate,

visit nf1registry.wustl.edu to set up

your account.

To learn more about the NPRI or the

Washington University Neurofibroma-

tosis (NF) Center, visit nfcenter.wustl.

edu.

This information was provided by Dr.

Kimberly J. Johnson, Assistant Pro-

fessor at the Brown School Master of

Public Health Program at Washington

University in St. Louis.

In 2011, the Washington University

Neurofibromatosis Centre launched

the Neurofibromatosis Type 1 Patient

Registry Initiative (NPRI). This unique

international NF1 patient registry col-

lects information to help doctors and

researchers better understand the

range of medical, psychological, and

social problems experienced by chil-

dren and adults with NF1.

The information collected by the reg-

istry may one day help clinicians to

develop personalised strategies that

improve the quality of life for individu-

als living with NF1.

Over 1,300 individuals from countries

around the globe, including Australia,

have participated in the registry to

date.

NF News 03

AuniqueinternationalNF1patientregistrycollectsinformationtohelp doctors and researchers better understand the range of medical, psychological, and social problems experienced by children and adultswithNF1.

Dr. Johnson’s research focuses on

identifying genetic and environmental

factors for cancer. Dr. Johnson is cur-

rently the principal investigator of the

international patient registry of individ-

uals with NF1, conducting studies that

aim to understand genetic and envi-

ronmental determinants of paediatric

brain tumours.

(From the Washington University in St.

Louis website: brownschool.wustl.edu)

NF1 Patient Registry Initiative to Advance NF1 Research

The Gippsland NF Support Group held

a meeting in May and had a great time

sharing stories and catching up. Group

member Hayley Reggardo reported on the

recent luncheon held at the RSL Moe on the

4th May, 2013 with 18 members attending.

Hayley said “We all had a great time

catching up on what we have been

doing in the past months, comparing

holidays, shows, and grandparents with

grandchildren.

My parents were told I had NF when

I was 4 years old and Mum contacted

Mr Armstrong then. I am now 33 and

personally have found the friendships

made and sharing our stories one of the

best therapies there is.”

The Gippsland group invite anyone in

the Gippsland and Melbourne areas to

join them for their next meeting

Date: Sunday 24th August

Time: 12:30pm

Place: Food Star Narre Warren, 442

Princes Highway, Narre Warren

(Ph. 03 9796 7799)

Details: Amazing variety of food. All

you can eat for $18.50, seniors $15.50,

and child discounts available. Includes

tea and coffee. Soft drinks, juice and

alcohol available.

To enquire about the 24th August

Gippsland NF Support Group meeting

please contact Jill Clarke on 0409 144

085 or jec782@bigpond.com

“I personally have found the friend-ships made and sharing our stories one of the best therapies there is”Hayley Reggardo

Gippsland NF Group: supporting each other

04 NF News

NF Awareness Month saw the first CTF NF Walks to take place in Australia – drawing inspiration from a successful program run by CTF in America to create NF awareness, build support, and encourage fundraising and networking in local communities.

Townsville (QLD) hosted the first NF Walk in support of CTF Australia on Saturday 18 May.

The event was organised by Christine

James, whose husband has a mild

case of NF1 and whose two young

sons Ethan (3) and Nate (16 mo) also

have NF. Partly through the CTF’s

closed Facebook Group, Christine

found another six families living in her

area affected by NF who were keen

to join in raising awareness about the

condition.

The James family expected only 30

people to attend so were amazed to

have over 80 community members

join the walk through The Strand Park,

including a local councillor and some

of their children’s school teachers.

NF pamphlets and balloons were

handed to walkers along the way and a

sausage sizzle for gold coin donations

was held at the end of the walk. Along

with establishing a presence for NF,

the Townsville NF Walk raised over

$2,500 using the CTF fundraising

pages to help provide support and

promote research.

Christine said of the day, “It was lovely

to be able to meet other local families

with the same or similar issues. We are

planning on another catch-up soon

where we can all just chat to each

other about NF and just about day to

day issues.”

Townsville community members and

charities have already offered to

support next year’s NF Walk, including

the local Lions Club.

Special thanks to the following people

and organisations for their help and

support of CTF and the Townsville NF

Walk:

Glenn and Georgina Whelan for organising a banner for the event

Michelle Ormes and Bendigo Bank for donating their company marquee for the day

Jackie and Martin Cook for providing sausages and drinks for the day

Christine and Paul James for

donating drinks, bread and

condiments for the day

Townsville Police Service who are currently undertaking a raffle, proceeds from which are being donated to CTF

Aitkenvale State School for hosting a coloured shirt day and collecting gold coin donations for CTF

Irene and Terry Howard for donating a 2012 QLD State of Origin fully signed and mounted jersey to be auctioned/raffled for CTF

CTF Australia has set up online fundraising pages and information to help NF Walk organisers get started.

NF Walks: one community at a time

NF News 05

Harrison’s Army, Running

Images Facing page Townsville NF Walk This page Broken Hill NF Walk

NF Walks: one community at a time

The dirt road was lined with signs stating NF facts which prompted plenty of questions and made for a truly unique awareness-raising event. Broken Hill was next to host an NF

Walk. Mia Lawrence and her family

decided to run the event in support of

Mia’s nephew, nine year-old Hamish,

who has NF1. Although the event was

postponed from its original date of

2 June due to rain, the weather was

perfect on Sunday 10 June for the 82

people who walked along Nine Mile

Road in outback NSW.

While some simply walked, others

pushed strollers, a few children rode

their bikes, and Greg Lawrence towed

his son Joseph on a small trailer

attached to his belt. Even Alfie the

Shetland pony joined the walk! One

community member brought along a

hand-made wheelbarrow and collected

donations that reached a total of $109

at the end of the 8km walk.

According to Mia, people were

extremely generous on the day and

have already expressed their interest

and support for making the Broken

Hill NF Walk an annual event. Through

A big thank you to the following for

their kind support:

Top End Meats for providing sausages for the BBQ

Bakers Delight and Mcleod’s Bakeries for providing bread and ice

Woolworths for providing bottled water

Foodland Broken Hill for providing poppers

Standley’s Distributors for the Cool Room Hire

Hotondo Homes Mildura for donating a $150 Coles Myer gift voucher for use in the raffle

Special thanks to the following

companies for their generous financial

donations:

Broken Hill Toyota and Mazda

Bridgestone Service Centre

Busy Kids Child Care

Outback Cuppa’s

the post-walk BBQ in the creek, raffle,

and other donations, over $1,000 was

raised on the day, and over $5,500

was raised through the NF Broken Hill

Walk fundraising pages.

“My most exciting outcome of the

event was to raise awareness about

NF through the media, discussion, and

Facebook,” Mia said. “We were also

able to link two local NF families who

were able to come to the event and

exchange contact details.”

Mia has also written to medical

practitioners and disability services

in Broken Hill in the hope of reaching

more people in the local community

affected by NF for next year’s event.

Radio Rentals get the May spirit

06 NF News

month spirit on Friday 17 May (World

NF Awareness Day) with their in-

store fundraisers. While stores from

Bendigo (VIC) to Blacktown (NSW)

and Wagga Wagga (NSW) lounged

in their pyjamas all day, the team at

Devonport (TAS) donned some very

cool Star Wars outfits plus one in a Big

Mac costume – all in the name of NF

awareness!

The Sydney City stores also joined in

on International NF Awareness Day

festivities by hosting the Radio Rentals

10-Hour Treadmill Challenge. The

fundraising event challenged staff to

play tag-team to keep two treadmills

running for ten hours in the middle

of Central Station’s Railway Square –

one of Sydney’s biggest and busiest

transport hubs – to support CTF and

NF awareness. Thanks to the Toga

Group for their support in providing

the space in the busy precinct.

Cupid’s Undie Run is the world’s largest

organised underwear run, serving as an

international fundraiser to benefit the

Children’s Tumor Foundation in the USA

and Children’s Tumour Foundation of

Australia (CTF). The event combines

a pre-race party, an approximate one

and-a-half km undie run and return to

the party. The annual event is held on the

weekend before Valentine’s Day.

In 2010, founders Brendan Hanrahan,

Chad Leathers, Bobby Gill and Tamara

Forys set off on a mission to raise

awareness and donations to the CTF

USA after Chad’s brother Drew (pictured

centre below) received a diagnosis of

Neurofibromatosis (NF).

In February 2010 Cupid’s Undie Run held

its first fundraising run in Washington,

DC just outside of the nation’s Capitol

Building raising $10,000. In 2013, the

run expanded into 17 cities across the

USA and to Sydney, Australia. Each run

operates with the support of dozens

of volunteers – creating an organised,

enjoyable, unique experience for the

event’s 8,000+ runners. In 2013 Cupid’s

has raised more than $1.1 million

internationally.

Cupid’s Undie Run embodies a “be

bold” philosophy, raising awareness

for CTF through the ‘bare’ statement

of sporting just undies. However, this

minimal clothing is balanced with

maximum support and commitment to

keeping things “PG-13” that is putting

the hilarity in charity in order to allow

for a fun, youthful experience. While

Cupid’s Undie Run promotes expression,

it also maintains a level of regulation that

creates a borderline “family friendly”

environment – keeping the focus on NF

1. 2.

3. 4.

5

The treadmills ran non-stop from 8am

to 6pm amid busy Sydney commuters.

Radio Rentals volunteers were out

amidst the passers-by collecting

donations and selling CTF penguins.

Most popular among the lunch-time

crowd was the Gold Coin sausage

sizzle! Through online fundraising and

donations received on the day the

event raised over $4,500 for CTF.

Recently Radio Rentals and Rentlo

managers took their fundraising to the

Gold Coast for a boot-camp style team

building exercise as part of the Annual

Conference. The boot-camp on Friday

28 June challenged participants across

all fitness levels as they crawled and

balanced their way through all sorts

of obstacles. Using the CTF’s online

fundraising pages the Radio Rentals

staff raised an impressive $5,421 for

their efforts.

1.

Pyjamas, Star Wars, Boot-Camps, Treadmills and a man in a tutu all had a place in raising funds and awareness of NF during May Awareness Month 2013

Radio Rentals and Rentlo staff around Australia have also been busy helping us spread the word about NF.

As well as selling CTF merchandise in

their stores, staff got into the May

1. Radio Rentals staff in Deveonport in their Star Wars costumes 2. GM Derrick Hubble hitting the Treadmill Challenge in a tutu for a $500 donation! 3. Radio Rentals and Rentlo Managers dual at their Annual Conference Bootcamp Fundraiser

Mid-North Coast NF Weekends

In addition to a month of fundraising, some of our NF families also used Awareness Month as a time to catch up.

Six families joined organiser Cheryl

Maurer at Hat Head in NSW for a

wonderful Saturday picnic lunch on

Saturday 25 May, and about half

of the families stayed the night in

accommodation ranging from camp

and caravan sites to cabins.

While the children enjoyed different

activities including beach football,

cricket and the popular afternoon

treasure hunt, the parents spent their

time exchanging plenty of stories and

valuable information. This community

get-together is one many families in

the mid-north coast area of NSW look

forward to. It’s a great way for both

children and parents affected by NF to

develop friendships and local support

networks.

The next Hat Head weekend will

be from 9 to 11 November 2013.

Arrangements have been made for 5

cabins and 5 camp sites. If you would

like to attend the next NF Family Picnic

please contact Cheryl Maurer on 02

6585 8232 or 0437 858 232 or email

maurercheryl@gmail.com.

Are you planning a community event?

Let us know and we’ll help spread the word to the NF community so we can connect NF families around Australia.

4.

Leading harness racing driver Chris

Alford again participated in NF Aware-

ness Month. In 2011 Chris, whose 6

year-old daughter Katie has NF1, raised

an amazing $60,000 for CTF which

contributed towards the purchase

of Australia’s first mobile machine

to diagnose optic tumours. Chris did

not expect to match that incredible

amount this year but did want to con-

tinue his support for CTF.

Chris said “I hope to be able to wear

the Children’s Tumour Foundation

Race Colours each May to remind

people that there is still no cure, nor

adequate treatment for that matter. I

would love to be able to raise $5,000

this year…but I know that it’s tough

times out there for a lot of people

so even if I can just continue to raise

awareness then I’ll be happy.”

Racing 4 NF continues to make a differenceThe champion driver notched up wins wearing his orange and white silks with the CTF Penguin logo with NF daisy prominently displayed.

Chris Alford with a winner on the last day of NF Awareness Month.

We still have some vacancies. Prices

for the camp are $275 for a family

of 4 (plus $25 for each extra child)

and $110 per adult individual. All

prices are inclusive of GST and cover

accommodation in rooms with ensuite

bathroom plus all meals.

Full payments and final bookings are

due by Monday 26 August 2013.

A reservation form is available at

www.ctf.org.au, email the office at

development@nfaa.org.au

or phone Noeleene on 02 9719 3356.

Don’t miss out: 2013 Family Camp

The 2013 Annual Family Camp will be

held from 13 to 15 September at Myuna

Bay. Only an hour and a half north of

Sydney, Myuna Bay is a NSW Sport

and Recreation Centre, which provides

a wide array of recreational facilities

on-site and can accommodate all ages

and abilities. Come along and make

new friends and have a great time.

NF News 07

Cheryl Maurer and her family have

camping facilities by the river on their

farming property 30 kms north-west

of Port Macquarie NSW. The area is

availabe free to all NF families wanting

a farm/river stay camping area. Four

NF families are already planning to

use the area in the January holidays.

Contact Cheryl for more information

about this generous offer at 02 6585

8232 or maurercheryl@gmail.com

The Alfords again received wonderful

support from Harness Racing Victoria

and the HRV community. The cham-

pion driver notched up wins wearing

his predominantly orange and white

silks with the CTF Penguin logo with

NF daisy prominently displayed. To

cap the month, the Hamilton Harness

Racing Club named a race after the

Children’s Tumour Foundation on their

Thursday program.

The Hamilton club not only provided

a rug to the winner of race two – the

Children’s Tumour Foundation Pace –

they also collected donations on the

day and ran an inspiring story in their

local paper.

In 2013 Chris, his wife Alison and

Katie ended up raising an impressive

$8,800 through his online Racing 4

NF fundraising campaign, donations

and collections, and also helped create

an awareness of NF on the track and

through radio and press interviews.

Holiday Offer for NF Australia families

OUR SPONSORS & SUPPORTERS

4

WWW.CTF.ORG.AU

ACT

Ruth O’Brien

Email ruth@rj-networking.com.au

NSW – Mid-North Coast

Cheryl Maurer (NF Family Picnic Day

enquiries)

Phone 02 6585 8232 or 0437 858 232

Email maurercheryl@gmail.com

NSW – Newcastle

Vicki Brazier

Email vickiandneil1@bigpond.com

NSW – Northern

Gwen Butler

Email butlersg@bigpond.com

QLD

Alexandra & Tien Chuc

Email alexchuc@westnet.com.au

Christine James (Townsville)

Facebook: Neurofibromatosis NF Towns-

ville QLD

GET CONNECTED Local Support Groups and Contacts

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: ............................................

Supported by NSW Health

TM

We take this time to remember members of the NF community who have recently passed away. We offer our most sincere condolences to family and friends. Please keep these people in your thoughts.

Andrew Keith Hamer

CTF received $800 in donations in mem-

ory of Andrew Keith Hamer. Thank you to

all donors for their generosity and to the

Hamer family for choosing to support CTF.

Our thoughts are with family and friends

at this time.

Order forms are available at ctf.org.au

TM

TAS

Stan Mead

PO Box 234 Sorell TAS 7172

VIC

Bill Ellerton (Chairman, Victorian State

Committee)

Email bill@mainstaybusiness.com.au

VIC – Gippsland

Eddie Beulke (Gippsland Neurofibromato-

sis Support Group)

Phone 03 5134 1070

Email eddiebeulke@hotmail.com

SA

NF Association of South Australia

PO Box 867 Marleston SA 5033

Phone/Fax 08 8293 2770

WA

David Freedman (President NF Associa-

tion of Western Australia)

Email watso@cnswa.com

CUPID’S UNDIE RUN WILL BE BACK AGAINOur Valentine’s Day event will be back on 9 February 2014! To register your interest go to www.cupidsundierun.com.au

Join us to raise funds for a Melbourne Support Officer. Our special guest is Professor Kathryn North, Director of the Murdoch Children’s ResearchInstitute

at www.ctf.org.au

Plush Penguins $20 ea

Fundraising Boxes $50 ea

JOIN NF AUSTRALIAThere is power in numbers. Let’s join together to improve the lives of those affected by NF.

Membership of NFA is free. Sign up online now at http://www.ctf.org.au/get-involved/join-nf-australia/ and click the online membership form.

PENGUINS FOR NF

IN MEMORY

Friday 31 May 2013Four Seasons Hotel, Sydney

Australia

Thanks to UTS Student Volunteers

Special guest Dr Nigel Clarke, Acting Director of the INMRand

MC Rob Carlton who donated his time

The Children’s Tumour Foundation of Australia thanks the following Sponsors and Supporters

TM

Diamond Sponsors

Gold Sponsors

Silver Sponsors

Bronze Sponsors

 

Event Sponsors

Platinum Prize Sponsor

Prize Sponsors