nf news autumn 2013
DESCRIPTION
Newsletter of the Children's Tumour Foundation of Australia (NF Australia)TRANSCRIPT
NF NEWS
make a difference in may: nf aWareneSS mOnTH
What’s on in May
Issue 121 • Autumn 2013
Members, friends and supporters of the NF community are being urged to spread the word about NF and help raise funds during Awareness Month in May 2013.
Taking up the call to action in her local commu-
nity is christine James of Townsville.
christine and a group of friends are organising
the first nf Walk to raise awareness in northern
Queensland. a stroll along the Strand will be
followed by a Sausage Sizzle. The community
has been invited to take part, and christine and
her boys have been featured in the Townsville
Bulletin. a fundraising page has been set up by
the national office for the Townsville Group to
encourage donations (pictured below)
chris alford will be racing for nf again this
may, this year wearing the children’s Tumour
foundation colours. Harness racing Victoria
is supporting chris in his campaign with stories
in their newsletters and spreading the word on
their facebook page. chris also has a fundrais-
ing page.
radio rentals stores will be supporting aware-
ness month in may too, including two events
on international nf awareness day, friday 17th
may. The mayfield Store in nSW will be hosting
a Pyjama Party, with staff members wearing
their jim-jams to work and selling penguin
merchandise.
The Sydney Store at railway Square is holding
a 10 Hour Treadmill challenge. The challenge
will take place in the busy Henry deane Plaza
shopping precinct. The city stores and staff will
be joined by members of the public in an effort
to keep two treadmills running non-stop for 10
hours, from 8 am to 6 pm. members of the nf
community are encouraged to take part in the
challenge, or volunteer to help out on the day.
more details are available at www.everydayhero.
com.au/event/radiorentals-treadmillchallenge.
finally, we encourage you all to become mem-
bers of nf australia or renew your membership
and join us in making a difference in may. There
is no cost, but you must complete an application
form.
suite 2 84 v ictoriA rd druMMoyNe Nsw 2047 ctF.org.Au
Australia
Generously supported by Thorn
1-31 may
Chris Alford is Racing for NF in May
Support Chris at www.everydayhero.com.au/event/racefornf
17 may
Radio Rentals 10 Hour Treadmill Challenge to Benefit the CTF
At Radio Rentals city store, Henry Deane
Plaza, Railway Square - from 8 am to 6 pm
www.everydayhero.com.au/event/radiorentals-treadmillchallenge
Radio Rentals Pyjama Party
At Radio Rentals Mayfield store (Newcastle)
18 may
NF Walk Townsville
At the Strand, Townsville, starting at 10 am.
Sausage sizzle to follow.
www.everydayhero.com.au/event/nfwalk-townsville
25 may
NF Family Picnic at Hat Head
www.nfaa.org.au/get-involved/community-events/mid-north-coast-nsw/nf-family-picnic-day-2013/
31 may
Black & White Gala Dinner
Where: Four Seasons Hotel, Sydney
Time: 6.30 for 7 pm
www.nfaa.org.au/get-involved/events/black-white-gala/gala-dinner-2013/
Christine James, with sons Ethan and Nate Photo Townsville Bulletin
From the CEO New Patron Announced
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: [email protected]: 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 [email protected]
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
The Children’s Tumour Foundation of
Australia is delighted that Professor
the Hon Stephen Martin has become a
National Patron of the charity.
Currently the Chief Executive of
CEDA Stephen Martin has had a long
and distinguished background in the
Australian Parliament, academia and
the private sector. He represented the
New South Wales-based electorates
of Macarthur and Cunningham in the
Australian Parliament 1984-2002. In
Government, he served as Speaker
of the House of Representatives,
Parliamentary Secretary for Foreign
Affairs and Trade, and Chairman of
the Inquiry into the Australian Banking
Industry. As a member of the Shadow
Cabinet, he held portfolios in Defence,
Small Business, and Trade and Tourism.
On retiring from Parliament, Professor
Martin held a number of senior
executive roles in academia, including
President/Chief Executive Officer of
the University of Wollongong in Dubai,
Pro Vice Chancellor International at
Victoria University, Melbourne and
Deputy Vice Chancellor (Strategy
and Planning) at Curtin University of
Technology in Perth. He is a Director of
Global Science and Technology Forum,
Singapore and Visiting Professor at
Sydney Business School, University of
Wollongong.
Professor Martin looks forward to
highlighting the charity as a whole,
and its plans to make a real difference
in the lives of the thousands of
Australians who are impacted by NF.
Page 1: may awareness monthPage 2: message from the ceO new Patron announced Page 3: Social connections: Bringing the nf commu nity closerPage 4: cupid’s Undie runPage 6: radio rentals do it tough for nfPage 7: fundraising - everyday Heroes - Team ataxia 2013 family camp - save the datePage 8: Our Supporters Support Group contacts in memory
In thIs issue The Children’s Tumour Foundation
website is continuously undergoing
changes to make it relevant. We’ve
been busy updating the content,
current links and easy-to-navigate
main menus. There is more to do,
especially in the Research section.
The last thing we want is for the
information you seek to be missing, so
please tell us if you would like content
added. Don’t forget to visit www.ctf.
org.au and let us know.
Each of the main menus now provides
links and brief summaries of each
section. To find specific information we
recommend using the powerful search
box which is able to quickly pick up
information based on key words and
phrases. We’ve also updated the links
for the information brochures, forms,
and related websites, so articles
and listed websites are now readily
available.
The “Get involved” section has
information and photos from recent
and upcoming CTF fundraising and
community events like Cupid’s Undie
Run and the Black & White Gala
Dinner, and the NSW mid-North Coast
NF Family Picnic. We also have a
“Fundraising Heroes” page with photos
and stories about the people who
have been, and continue to be, active
fundraisers for the Foundation. We will
continue to update these pages as we
hear about new events and fundraisers
so make sure you tell us all about
them.
And, don’t forget to take a look at
the new Everyday Hero fundraising
microsites for community fundraising-
an example is www.everyday hero.com.au/event/nfwalk-townsville
Australia. To show your support and
spread the word make sure you “Like”
our page so we can reach more people
about NF and our mission to find a
cure.
Twitter is a fast way to share the latest
news with an active audience of 288
million users. This was especially useful
in profiling the inaugural Australian
Cupid’s Undie Run event, having had
no prior exposure and limited time and
resources to advertise the event. We
launched the Cupid’s Undie Run Aus-
tralia Twitter account in late January.
Twitter allowed us to start conversa-
tions with other Australians and gen-
erate “buzz” for the run. We converted
interested Sydneysiders into registered
participants and also managed to gain
support and interest from various Aus-
tralian media including DNA Magazine,
Runner’s World Magazine, mX Sydney,
and the Channel 9 Morning Show. The
Cupid’s Undie Run Twitter account is
continuing to grow and we will use this
to post updates about the 2014 run as
they come in. To stay in the loop about
The Children’s Tumour Foundation is now on Facebook and Twit-ter to make information-sharing, support-building and networking quicker and easier.
A warm welcome to everyone who
is now part of our closed Facebook
group and Children’s Tumour Founda-
tion Facebook page.
The closed Facebook group was cre-
ated last year and it has proven to be
an excellent source of support and
conversation among our members
and the NF community around Aus-
tralia. The group is continuing to grow
and is nearing 200 members who are
all extremely generous in providing
advice, sharing their experiences with
NF, and organising social activities.
To join in the conversation with other
Australians affected by NF search for
“Children’s Tumour Foundation (NF
Australia)” on Facebook and ask to
join the closed group.
The Children’s Tumour Founda-
tion Australia Facebook page was
launched in January to share photos
from events, updates on upcoming
activities, and developments in the
NF world. You can also use the page
to share your story, post suggestions
or photos from one of your aware-
ness-raising events, or to simply say
hello.
The Facebook page currently has 64
“Likes” reaching 14,000 friends of fans
and we would really like your help in
spreading awareness of NF and CTF
NF News 03
Around Australia people are using social networks to connect and network. Savvy members and friends are getting onto the bandwagon to spread the word and fundraise with NF Australia’s Children’s Tumour Foundation online giving hub and social media tools. Here’s a rundown
all things Cupid, and to connect with
other Australian undie-runners, follow
us at www.twitter.com/CupidRunAUS.
The Children’s Tumour Foundation of
Australia Twitter account was created
following the success and positive
response to the Cupid’s account. Sim-
ilar to Facebook we use this to share
NF-related updates, news or event
information. It’s also a way for us to
share NF news from around the world
as this platform has opened connec-
tions with international NF organisa-
tions. We currently have 43 followers
on our CTF Australia account, and
among these are contacts with CTF
USA and The Neuro Foundation in the
UK. You can follow us and connect
with the NF community on a global
level through www.twitter.com/
CTF_AU.
Mobile GivingChildren’s Tumour Foundation is now on the new mobile app Give Easy. Give Easy is a social fundraising tool that allows you to donate to your charity quickly and securely via your iPhone or iPad, making giving easy to do anywhere and any time.
The Give Easy team was a great sup-port for us at the Cupid’s Undie Run, setting up a special campaign page for the event and running a competi-tion for the highest donor on the app, which allowed us to raise an additional $1,035 on the day.
You can download the FREE Give Easy app from iTunes and find us by search-ing Children’s Tumour Foundation.
“We can now provide better tests for athetic performance as well as respiratory and al-lergic disorders like asthma and skin allergies which may have relevance to human medicine.”
Social connections: bringing the NF community closer
04 NF News
Cupid’s Undie Run was launched in Sydney on Sunday 10 February 2013 with participants enjoying the scenic harbour side location of King Street Wharf and the Barangaroo Foreshore Walk on a sunny February afternoon.
The event kicked off at noon with
participants checking in and collecting
their registration packs, which included
a free t-shirt, temporary tattoos
and a wristband identifying them as
Undie Runners. Packs for participants
who raised $50-$250 included a
pair of Cupid’s unique undies. Packs
for participants raising $250+ also
included a special wristband providing
access to the VIP open bar.
A free pair of red undies was provided
by Bonds to all participants who
registered early and accessed the
special offer through bonds.com.au
before midnight 7th February.
Volunteers from the Children’s
Tumour Foundation of Australia
assisted throughout the day, including
manning the registration desks and
busy Cloakroom where runners were
able to deposit their kit in a secure
environment.
Nearly 200 runners took part in the
inaugural Sydney event coming from
as far as Western Australia, Tasmania
and Queensland, with one flying in
from across the ditch. There were
many outrageous costumes putting
the hilarity in charity as the event
intended. Feedback was extremely
positive with many undie runners
commenting that they would be back
next year with friends.
“Thank you for the awesome experience & allowing me to be part of such a great event. I’d like to continue to participate & help in any way I can. We’ll be there again next year and our team will be bigger!”
Actress and former Big Brother
contestant Gianna Pattison MC’d the
event and Miss Universe Australia 2010
Jesinta Campbell kicked off the run
and presented the Awards to the team
and individuals who raised the most
money for the cause.
As well as raising awareness of NF, In
total the event has raised more than
$30,000 for the Children’s Tumour
Foundation of Australia, with 76% of
funds raised by those with no prior
connection to NF,.
Cupid’s Undie Run: brief but brilliant
NF News 05
Cupid’s T-shirts available for sale
Images clockwise from left: Jesinta Campbell and runners at the start; Harrison’s Army who raised more than $11,000; Runners at the halfway mark joining in the Goodlife aerobics session; NF Australia members Ralph, Julia and Jessica Szulerowski; NF Australia directors and family member volunteers
Cupid’s Undie Run is the world’s largest
organised underwear run, serving as an
international fundraiser to benefit the
Children’s Tumor Foundations in the USA
and 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 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 to 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.
The “I’m With Cupid” t-shirts worn
by Cupid’s Undie Run participants
were so popular on the day even
spectators were asking about
them! Given the amount of inter-
est we received we’ve decided to
make them available for purchase.
The t-shirts will sell for $20 for
members and $30 for non-mem-
bers. We’re currently working on
an online store to make purchasing
easy for you and will notify you
when the store is up and running.
In the meantime we are taking
expressions of interest for t-shirt
purchases.
There are only a limited number of
shirts left so make sure you get in
quick as they will be sold on a first
come first served basis.
Email [email protected]
Radio Rentals do it tough for NF
06 NF News
On Saturday 19th January, a team of 8 from Radio Rentals Victoria lined up to take part in the Tough Mudder challenge and raised $5,000 for the Children’s Tumour Foundation.
Team leader Alan McKinlay, Radio
Rentals SOM Vic Metro West, tells the
story of the 18 km event.
“Originally a team of 10, we
unfortunately lost a couple due to
illness and injury before the day. That
said, we started with 8 and finished
with 9 - that story will come shortly.
There was myself (Vic Metro
West), Fiona (Geelong), Sarah
(Geelong), Evan (Geelong), Tristan
(Warrnambool), Mark (Preston),
Darren (Preston) and Steve (Ballarat).
We were nervous to start but as the
gun sounded, we started together with
a vow to cross the finish line together.
We nearly lost one just before the
start as to get to the start line we had
to scale an 8 foot wall. Tristan went
up with ease, but also nearly went
head first down the other side. Crisis
averted with 8 at the start.
1. 2.
3. 4.
5
Straight after we started, I noticed
another guy in a blue top who
appeared to be running alone. I asked
what happened to his team and he
said they had pulled out but he was
still keen to do it so he was there by
himself. The offer was made for him to
join us and we said welcome to Andy
from Hervey Bay who became the
9th member of the team. That is the
camaraderie required to complete the
course and I thought another person to
help would come in useful.
Obstacle 1 was a great wake up call
- the ARCTIC ENEMA!!! Had to jump
into a massive dumpster filled with
green ice, get under a wall and when
you came up the other side there
was 10 people waiting to get out so
you just had to stand there freezing
with your body wanting to shut down
because of the cold. Then came
some walls and a lot mud. Tristan
and Darren lost and found their shoes,
Sarah and Andy got bogged in several
times and Mark took a massive face
plant that had him camouflaged for the
rest of the day. A heap of team work
was required to get everyone over,
under and through the mud.
We had a quick breather at around
8km and you can see we were pretty
dirty at this stage. With a mere 12km
to go we continued on to high walls,
log carrying and some brilliant scenery
on the coast at Philip Island.
One of the more meaningful moments
for me came at around 13km when a
volunteer at a food and drink station
noticed our ‘SUPPORTING THE
CHILDREN’S TUMOUR FOUNDATION’
logo on our shirt. She said her son
had NF and gave us a heartfelt THANK
YOU for raising money for the cause.
The legs didn’t seem to hurt as much
at that stage.
At around 15km, we were jumping off
a 6 metre platform into the pool below
and taking a swim...... then a bit more
mud followed. Over the 20 foot cargo
net, up the huge stack of hay bales and
then the legs really started to hurt.
Another wake up call at 17km with
Electric Eel. Had to crawl through a 10
metre long pool of water with 10,000
volts of electricity hanging down........ it
was all about speed and minimising the
damage. I never did see the guy that
snuck up behind me and punched me
1.
She said her son had NF and gave us a heartfelt THANK YOU for raising money for the cause. Our legs didn’t seem to hurt as much at that stage.
Veterinary students conduct free pet health checks at Northcottin the back of the head...... that’s what
the shock felt like anyway.
Then another couple of km’s and we
all grouped up again at Everest - a 15
foot quarter pipe that is slippery and
extremely hard to get up as you’ve
already been going for over 19km.
Most tried, most got up, some missed
but not through a lack of effort and
using every piece of energy left in the
body.
The finish line was so close..... just had
to run through another 10,000 volts
of electricity to get there. This time it
was Fiona that took the biggest whack
with a massive shock to the head.
But then it was over. 8 had started
and 9 had finished (I’m still impressed
with that stat). We grabbed our
orange head bands, our t-shirt and our
beer.
I’m extremely proud of everyone. It’s a
massive personal achievement to start
and finish and to raise some money
along the way made it even more
satisfying.
To those who have donated to this
very worthy cause, Thank You!!! It is
greatly appreciated.”
4.
Team Ataxia (Gordon Mackenzie, Chris
Evans and Dale Boccabella) from the
School of Tax & Business Law UNSW
are all delighted to have finished in
the triathlon in around the hour mark,
when, indeed, their sole objective was
just to survive the event.
The team, which set a goal of $1,000
raised over $4,000 for NF Support
Services, and completed the triathlon
in a collective team time of 2 hours 43
minutes.
They would have been even faster had
Dale not warmed up before the event
and torn a calf muscle, had Chris not
chosen to argue for 3 minutes with
an event marshal about having the
strap of his cycling helmet unclipped
at the point where he was “transition-
ing” from cycling to running, and had
Gordon not been burdened with a
Coles green shopping bag containing
his shorts and running shoes as he fin-
ished the swimming and sprinted (sic)
towards his cycle.
Provisional results suggest they came
a highly creditable (!) 692nd out of the
726 teams that finished – but about
another 250 teams did not even com-
plete the course. The team suspect
they were the oldest team competing.
Given the potential efficiency gains
that can be made from their experi-
ence this year, next year they believe
they may even be challenging for top
spot (this year’s winners were only
twice as fast as them at 1 hour 24 min-
utes).
Fundraising - Everyday HeroesNF Australia member Dale Boccabella and his colleagues at the School of Tax & Busi-ness Law at the Uni-versity of NSW used the power of Online Fundraising and Social Media to raise funds for the Foundation In March
Chris Evans, Gordon Mackenzie and Dale Boccabella
1. The Team finishes 2. Fiona and the mud3. Tristan makes an entrance over the wall 4. Alan McKinlay and the mud tunnel.
Families attending the Camp enjoy a
wide range of activities, both fun and
challenging, make friendships and
memories to last a lifetime.
A reservation form is available with
this newsletter or from www.ctf.org.au.
Save the date: 2013 Family CampThe Annual Family Camp will be held
on the weekend 13-15 September
at Myuna Bay Sport and Recreation
Camp. Located on the shores of
beautiful Lake Macquarie, Myuna Bay
is a little over an hour’s drive north of
Sydney).
NF News 07
11th ANNUAL FAMILY CAMP14th - 16th SEPTEMBER 2012
MYUNA BAYNSW Sport and Recreation Centre
Come join us for a weekend of fun, friends and shared experiences at the annual NF Camp.
This year’s camp will take place at Myuna Bay on the shores of beautiful Lake Macquarie just a little over an hours drive north of Sydney.
Myuna Bay is a NSW Sport and Recreation Centre, which provides a wide array of recrea-tional facilities on-site, and can accommodate all ages and abilities.
Do you like to be challenged? Try the flying fox or climbing tower. Does archery interest you?. And there’s more – including swimming, fishing, canoeing, mini golf and beach volley-ball just to name a few of the activities you’ll engage in every day.
There are fully qualified instructors, a games room and activities for the littlies as well.
There is a range of accommodation, all with ensuite toilet and showers. If you haven’t come to a camp before, it is a relaxed and happy experience enjoyed by children and
adults alike. Friendships are formed and sup-port and information exchanged. Special guests from the medical world will attend.
This year’s camp will be coordinated by Geoff Bottom with a team including Brad Dowling, Winston Chiu, Margaret Dingle and Mandy Brown.
Places are limited. The cost of the camp has a very small increase on last year, and we are required to add gst this year. GST inclusive prices are:
$250 for a family of 4, plus $25 for each extra child
$100 per adult individual
Deposits are due by 15 July 2012 to secure your place
BOOKING FORM OVERLEAF
The camp remains heavily subsidised, and represents fantastic value for a weekend away for all food, accommodation and activities.
Australia
in memOry
oUR SpoNSoRS & SUppoRTERS
4
WWW.CTF.oRg.aU
Neuro-What?Neurofibromatosis (NF) is a genetic disorder that causes tumours to grow on the nerves throughout the body. Every nerve cell in your body has the potential to become a tumour causing blindness, deafness, bone deformities, learning disabilities and severe chronic pain. NF affects one in every 3000 births. More than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined.
There is no cure for NF and there are frighteningly few treatment options for these kids. Let’s make a difference.
nfaa.org.au
Cost: See Booking Form for Corporate Table & Individual Ticket pricesMembers Special Tickets $150 pp gst incl
includes 3 course dinner and beverages
Gala DinnerThe Black and White
Your invitation to a special celebration
invites you and your guests to
The Black and White Gala Dinner the Foundation’s major fundraising event for 2013
ctf.org.au
Donations over $2 are tax deductible
Join us for a wonderful night of fine dining, fun and good companywhile raising funds for vital research, treatment and support programs for kids with NF
with special guest MC: Rob CarltonPlace: Grand Ballroom Four Seasons Hotel 199 George Street, SydneyDate: Friday 31 May 2013Time: 6.30 pm for 7.00 pmDress: Lounge suit/cocktailRSVP: by 17 May 2013
Bookings: On the attached booking form or P 02 9719 3356 l F 02 9719 3575 l E [email protected] l W ctf.org.au
Together...improving the lives of those affected by Neurofibromatosis. Together...reaching for a cure
Neuro-What?
The Children’s Tumour Foundation of Australia is part of NF Australia
Booking Form overleaf
abn 26 148 815 534
2013 e- gala dinner invitation-gotham.indd 1 24/03/2013 12:10:04 PM
ACT
Ruth O’Brien
Email [email protected]
NSW – Mid-North Coast
Cheryl Maurer (NF Family Picnic Day
enquiries)
Phone 02 6585 8232 or 0437 858 232
Email [email protected]
NSW – Newcastle
Vicki Brazier
Email [email protected]
NSW – Northern
Gwen Butler
Email [email protected]
QLD
Alexandra & Tien Chuc
Email [email protected]
The 2013 Black & White Gala dinner on 31 may at the four Season’s Hotel, Sydney. Tickets available at member rates. more details on the website.ctf.org.au
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 [email protected]
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.
George Foundas
NF Australia member. Beloved husband of
Maria and father of Dean and Stephen
Brenda Steinback
NF Australia member
Corey Simmons
Son of Margaret and Andrew Simmons,
brother of Emma
Lorraine Bull
For her mother’s passing you can still order your penguin merchandise to fundraise for us! Order forms are available at ctf.org.au
TM
TAS
Stan Mead
PO Box 234 Sorell TAS 7172
VIC
Bill Ellerton (Victorian State Committee
enquiries)
Email [email protected]
VIC – Gippsland
Eddie Beulke (Gippsland Neurofibromato-
sis Support Group)
Phone 03 5134 1070
Email [email protected]
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 [email protected]
SUPPOrT OfficerThe first support officer to be funded by NF Australia wthin the hospital sys-tem will be based at the INMR at We-stead and recruitment for the position is now commencing. Initially the posi-tion will be part-time and include pro-vision of support to families, strong links into the NF clinical and research community, conducting a review of current information and education resources available to families through the neurogenetics clinic at Westead and from other sources, and an assess-ment of the resource needs of families affected by neurofibromatosis.