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March 2015
Newsletter of Haemophilia Foundation WA Inc.
March 2015
HAEMOPHILIA FOUNDATION WA INC.
City West Lotteries House, 2 Delhi Street, West Perth WA 6005
P: 08 9420 7294 F: 08 9486 8966 E: [email protected] W: www.hfwa.org
Page
Contact
March 2015
Page 2
Your Committee
Gavin Finkelstein (President)
Cheryl Ellis
(Vice President)
Robert Butler
(Treasurer)
Shane Meotti
(Secretary)
Jenny Holliday
Marcus West
Dustin Bridges
Pamela & Brian Wall
Inside This Issue
0415 978 031
0402 033 652
9284 3383
Profiles of committee members can be found on the
website, www.hfwa.org. “Your Committee”.
Haemophilia Counsellor/Co-ordinator is located at
Fiona Stanley Hospital
Ph: (08) 6152 6529
Mobile 0404 039 971
SUE HABERFELD
Monday & Thursday
8.00am—4.30pm
President’s Report
Farewell from Sharon Hawkins
Women’s Breakfast Invite
Perry Lakes Youth Event
Introduction from Sue Haberfeld
Factored In Update
Conference Funding - EOI
Fundraising
City to Surf - Save the Date
Get Involved
Bunnings Sausage Sizzle
Entertainment Books
Kids Corner
Dates to Remember
3
4
4
5
6
7
7
8
9
10
11
12
13
13
Attachments
Conference 2015 Registration Brochure
Office Coordinator
Haemophilia Foundation WA Office
Ph: (08) 9420 7294 Fax: (08) 9486 8966
Email address: [email protected]
Monday, Tuesday & Wednesday
9.15am—4.15pm
Newsletter kindly printed by Fuji Xerox
FIONA STANLEY HOSPITAL CONTACT DETAILS
Clerk: 08 6152 4137
Medical Staff: Dr Stephanie P’ng, Dr Dominic Pepperell.
Nursing Staff: Claire McGregor and Sandra Lochore.
Social Worker: Sue Haberfeld
ABDR Data Manager and Clinical Trial Coordinator: Marina Goruppi
Entrance to the Cancer Centre is on the outside of the building
Haemophilia and Haemostasis Centre
Level 1 Cancer Centre
Fiona Stanley Hospital
102-118 Murdoch Drive
Murdoch
WA 6150
Postal Address (address all correspondence as
Private & Confiden al)
Haemophilia and Haemostasis Centre
Level 1 Cancer Centre
Fiona Stanley Hospital
Locked Bag 100
Palmyra DC
WA 6961
Opinions expressed in Contact do not necessarily reflect those of the Foundation. All information is published in
good faith but no responsibility can be accepted for inaccuracies that may result from events beyond our control.
HFWA reserves the right to edit articles as it sees necessary. Materials supplied on the internet is for information
purposes only and is not to be used for diagnosis or treatment.
Contact
March 2015
Page 3
President’s Report
Hi Everyone
The last month has the seen the beginning of major changes for HFWA. Firstly, Melanie has
resigned after 8 years of great service to HFWA and our community, and she will be sorely
missed. We wish Mel all the best in her future pursuits. We are in the process of finding a
suitable replacement and we will introduce our new Office Co-ordinator in due course to you all.
To cap things off, Sharon resigned from her position as our social worker, effective at the end of
March. Sharon has been "on and off" with HFWA for about 15 years, initially as our office coordinator, then in her next incarnation as our social worker. She has served our community so
well that she needs a break to go and start a new phase of her life. We wish Sharon all the best
in the future and look forward to seeing that book published - one day !!! If you have any queries
as to what is happening with the social worker position, please contact us. Do not take any
action yet; we may need to call on the community, but if we do it will be in an organised and
coordinated way. It’s imperative that we get the best result we can for our community, and we
do not want this opportunity to be jeopardised.
Although we have lost Mel and will be losing Sharon, the work of HFWA doesn't stop. There is a
Women's Breakfast at The Pagoda on Sunday 29th of March.
We have the annual Bunnings Sausage Sizzle at Bunnings Homebase, 55 Salvado Rd, Subiaco
on Saturday 11th of April and we are looking for willing helpers, so if you are available please
email the office. If you are unable to help out we are always in need of drinks to sell at the
sausage sizzle, please contact the office ([email protected]) to drop them off whilst someone is
there.
Our two main fundraising goals over the next year are to get as many people to the Australia
and New Zealand Haemophilia Conference, which is being held on the Gold Coast from 1 to 3
October. Please register your interest as soon as possible. Our other big item is the Community
Camp to be held in March 2016.
Should you wish to discuss any issues that are of concern feel free to contact me.
Gavin Finkelstein
President
The newsletter is kindly printed by Fuji Xerox
Please note:
The HFWA Committee are currently recruiting for a new Office Co-ordinator. In this interim
period the HFWA Office is being staffed by volunteers from the committee and may not be
opened during the usual hours. If you are planning to come into the office please call ahead to
ensure someone is there.
Should you need to contact someone from the Foundation urgently and are unable to make
contact with the office please refer to the Committee contact numbers on page 2.
Contact
March 2015
Page 4
Farewell from Sharon Hawkins
As Gavin has advised in the Presidents
Report, I am leaving the position of Senior
Social Worker –Haemophilia, with 30th March
being my last day. I have worked in this
position since 2004 and as Gavin mentioned, I
had previously worked with the Haemophilia
Foundation WA in the Secretary/Co-Ordinator
position and assisted with the 1999
Conference co-ordinating. This history working
with people with inherited bleeding disorders
has been a major part of my life and has
offered me innumerable opportunities to
extend and challenge my practice as a social
worker, and to increase my self confidence
and personal development.
For the breadth of experience I have
benefitted from, I am sincerely grateful to the
entire community of people I have worked
with, and most particularly to the health
professional staff at Princess Margaret
Hospital, Royal Perth Hospital, Fremantle
Hospital & Fiona Stanley Hospital, as well as
all the committee members of Haemophilia
Foundation WA, the broader community of
Haemophilia Foundation Australia and the
Social Workers and Counsellors Group. It is
with some sadness that I leave a position that
I have reaped a great deal of enjoyment and
satisfaction from filling, however, the time is
right for me to move onto a new and exciting
stage in my life.
As a social worker, I have walked beside
many people reaching decisions to make
change in their lives, and have witnessed from
afar these people attaining their goals and
finding fulfilment, and this has been my
inspiration to move away from my role and
seek some new challenges. I consider it a
privilege to have been involved with each and
every person I’ve had contact with in my role,
and very lucky to have experienced the
amazing resilience, positivity and humour that
envelopes the diverse community of people
with inherited bleeding disorders.
My heartfelt thanks goes to all the individuals,
families and organisations, and I wish all well
for the future.
Sharon Hawkins
If anyone has any concerns or comments
about the future provision of a social work
service to PMH, FSH or in the community,
please contact the HFWA at [email protected]
or 9420 7294
Women’s Breakfast Invitation
Sharon Hawkins would like to invite you to a Women’s Breakfast on Sunday 29 March 2015.
Please see below for details:
VENUE:
The Pagoda, 112 Melville Parade, Como
TIME:
9.00am
DATE:
29 March 2015
RSVP:
25 March 2015 to:
HFWA Office on 9420 7294 or [email protected] or
Sharon Hawkins on 9224 2330 or [email protected]
The Women’s Breakfast is funded by HFWA and free to members.
Contact
March 2015
Page 5
Perry Lakes Youth Event - 7 March 2015
Socialising, Eating & Competition at its Finest!
With the challenge set, it was only a matter of
time before the rivalry would begin, and so it
did. Race names were claimed and game
faces were on. Start your engines!
What a great day we all had. Youth ages
varied from 12-17, with the mentors also
joining the pit crew. Experience or not, this
game was not giving anyone an advantage.
We started the day with a bit of socialising and
ball play, then it was time for the simulator -10
minute car race rounds. Heats were played &
then it was down to the quarter finals. There
was an upset when the car simulator needed a
reboot; was this planned, or was a player
grasping the steering wheel so hard he
corrupted the game?? All in all, the car
challenge was intense, competitive and fun. A
big congrats goes to Dale Spencer (mentor)
for winning the race, with Justin Robertson
coming in runner up.
During lunch we had a visit from an overly
friendly Kookaburra, who may have been
slightly more partial to our sausage sizzle than
Taj wanted to experience. But with all 10
fingers still intact, he was the winner of ‘Best
on Ground’. Taj demonstrated an all round
involvement on the day, joining in with
everyone for sports, racing and socialising.
‘King of the Hill’ went to Dale, taking the car
simulator head on and gaining the “Champion”
belt title. The title is up for grabs each event,
and its your challenge to take Dale down next
time, and hold the title and the belt!
‘Best quote or saying of the day’ went to Justin
Robertson, who was fabulous in his inquisitive
Continued next page
Contact
March 2015
Page 6
Perry Lakes Youth Event - 7 March 2015
Socialising, Eating & Competition at its Finest!
From Page 4
nature wanting to know everything there was
to know about the car simulator and how it
worked. Was this his advantage? Dale,
Justin and Taj each received vouchers for
their achievements on the day.
Big thanks to our helpers on the day and
especially for the impromptu Touch Football
game that followed. There’s definitely some
competing to be had at the next event.
Watch out for Zed, he’s got the mean roll for
the try, and Darren, who will eventually get
why we pass backwards. All in all a fantastic
start to some great events coming up! See
our flyer for this years events’, and if you
want to know any more, just drop me a line
[email protected]
Come along and check us out, but be
warned - it might be fun!
On March 7 2015, HFWA held a youth event.
This youth event is the first I have been to as
I have just turned 12. I'm happy that I can
finally come to the youth events now.
The youth event was Simulator Circuit
racing. We had a competition consisting of
several rounds and a knock out. The racing
was exciting, thrilling, and challenging. We
were driving Lamborghini's!
Being together with everyone else was
awesome as well, as we had not seen each
other a while - camp was a long time ago.
HFWA provided a sausage sizzle lunch for
all the teens and even a kookaburra got a
feed when it swooped down and grabbed a
sausage for itself
The next youth event will be Gladiators and I
am really looking forward to it.
Justin Robertson
Pam Wall
Introducing our new Social Worker at FSH
I am looking forward to meeting the bleeding disorders community, and to providing an adult
Social Work Service for adults at Fiona Stanley Hospital. I will be working on Mondays and
Thursdays from 8.00 to 4.30 and can be contacted on 0404.039.971 or landline 6152.6529.
Given Sharon’s wealth of knowledge and experience, I am so appreciative of being able to
spend some time with her at Fiona Stanley and wish her all the best in her future.
Sue Haberfield
Contact
March 2015
Page 7
Factored In Update
Factored In is the Haemophilia Foundation of
Australia's website for young people aged 13 to
30 years old. The website has lots of useful
information on things like travel, sport &
employment, and if a topic is not covered you can
submit your own questions to be answered by
your peers or medical professionals. You can also
add personal stories and join discussions about
life issues growing up with a bleeding disorder.
Comments and stories can be left anonymously if
you choose.
The aim of the website is to provide a safe,
judgement free place for young people to ask
questions, network and share their experiences.
The difference between Factored In and other
social media websites is that all comments and
stories are checked by moderators before they
appear. This ensures that privacy isn't
inadvertently breached and that any medical
information provided has been checked by a
health professional for accuracy.
I recently attended a weekend of training provided
by HFA to become one of these moderators and
learn about some of the cyber-safety issues
related to maintaining a website such as factored
in. A group of young people from around Australia
have joined this moderators group, and it was
great to work with a bunch of such highly
motivated people. In addition to the moderator
training, we also made a short video advert for the
site which you will hopefully see soon.
I highly recommend you check the website out. A
lot of hard work has been put into the website in
the background, so it would be fantastic to see it
really take off. The more people we have actively
using the site, the better it will become. I hope to
be approving some of your comments or stories
soon!
-Dustin Bridges.
Expressions of Interest - 2015 Conference Funding
Please send me an application kit to apply for funding to attend the 2015 Australian & New
Zealand Conference on haemophilia and related bleeding disorders, 1-3 Oct - Gold Coast.
Name: ________________________________________________________________
Address: ______________________________________________________________
__________________________________________ Postcode: __________________
Email:_________________________________________________________________
Please send me the kit Via:
o Mail or o Email.
Please return this form by 22 May 2015 to:
Office Coordinator
Haemophilia Foundation Western Australia
City West Lotteries House
2 Delhi Street
WEST PERTH WA 6005
Contact
March 2015
Fundraising
What’s On for 2015
Saturday 11th April
Sausage Sizzle at Bunning’s Subiaco
Sunday 30th August
City to Surf
Saturday 7th November
Quiz Night raising funds for Camp 2016
Haemophilia Quiz Night - 7th November 2015
Save the Date
Great News!!!! We are having a quiz night this year to raise funds for a camp in 2016.
For those of you who came to our last
Quiz Night you will know it will be a night
full of lots of fun and great prizes.
We are now looking for volunteers to help
set up on the day or help in anyway and
anyone who would like to donate any
prizes.
If you can help please call the office on
94207294 or Jenny Holliday on
0410100237.
So grab all your friends and family and get a table together for a great night.
Remember to save the date – 7th November 2015 !!!!
Jenny Holliday
Page 8
Contact
March 2015
Page 9
SAVE THE DATE FOR 2015!
The Chevron City to Surf for Activ will be
back in 2015, so mark Sunday 30 August in
your diary!
With the weather cooling down there's no better time to hit the
pavement than now so you're ready to blitz your running or
walking goals come race day!
Instructions for registering with Team Haemophilia will be
available shortly. In the meantime see how many people you
can get involved to either join you on the day or donate. This
year we hope to have a big contingent of walkers and runners
for Team Haemophilia, sporting tutus and red capes.
Marcus and Jenny’s Training Tips:
¨
Put the date in your calendar and work out how many weeks to go.
¨
Ask your family and friends to join too.
¨
Agree on a time, the days & place to do your training together - it’s always more
fun as a group.
¨
Get started – don’t put it off – do it today and back it up within 2 days.
¨
Make space in your calendar – book it in, if you have an electronic calendar,
there is nothing like a reminder to help keep you on track.
¨
Build up – start with a walk or even a bike ride for a low impact option. Get used
to getting out regularly. Whatever you do, don’t try to break records on your first
outing! Slow, steady and regular is a sure-fire recipe for success.
¨
Keep a log – if you have a smart phone, consider getting an app that tracks your
progress. It’s amazing how motivating seeing your sessions build up is. There
are heaps of free ones available – just be aware that they do use data and will
use battery charge.
¨
Most importantly – enjoy yourself.
Happy training!
Marcus and Jenny
Contact
March 2015
Page 10
Get Involved
World Hemophilia Day 2015
Building a family of support
Join us on April 17 to raise awareness about bleeding disorders and the need to build a family
of support for those living with them.
Families come in many forms but they all share the ability to support and advocate. World
Hemophilia Day provides an opportunity to talk to your extended family and friends, colleagues,
and caregivers to raise awareness and increase support for those living with an inherited
bleeding disorder.
You can also go one step further and have a local landmark, a light in your home or office, or
your front porch light lit in red on April 17 to show your commitment to the bleeding disorder
community.
This year connect to the global bleeding disorder family on the World Federation of Hemophilia
social media network and encourage your online community to join the global family.
Global Feast
Eat, drink and be caring
Help stop the severe pain and disability experienced by people with bleeding disorders in the
developing world and here at home. This year, participate in Global Feast, the international
event in support of people worldwide with bleeding disorders. It’s never been so easy to care for
people around the world. Host or attend an eating event and invite your friends, family or coworkers to participate and to bring a donation.
Global Feast benefits people around the world with bleeding disorders. All monies are donated
directly to WFH with funds spent on providing safe and effective blood treatment products free
of charge to people in urgent need in more than 50 developing countries and programs,
services, educating families and training doctors and nurses in some of the poorest regions of
the world. For more information on WFH programs and services visit www.wfh.org.
For more information or to run your own Global Feast contact 1800 807 173 or email
[email protected].
Haemophilia Awareness Week & Red Cake Day
11-17 October 2015
Join us for Haemophilia Awareness Week and Red Cake Day by hosting a Red Cake Day at
your work, school or at home with family and friends.
More information to come later in the year!
Contact
March 2015
Page 11
Bunnings Sausage Sizzle
Calling all volunteers!
Saturday, 11 April 2015
We will be holding a Bunnings Sausage Sizzle on 11 April 2015 as a lead up to World
Haemophilia Day at Bunnings Homebase, Subiaco.
We would like to you to come along for a couple of hours on the day to help us sell sausages.
Please complete the attached form and return to the office to let us know what time you are
available.
We would also like cans of Coke, Lemonade, Lift, Fanta and Diet Coke donated.
Post your form to:
Haemophilia Foundation WA
Reply Paid 83529
WEST PERTH WA 6005
Or just send us an email: [email protected]
I ………………………………………………. Would like to volunteer at the Bunnings
Sausage Sizzle between the hours of …………………………….
Supported by the World Federation of Hemophilia
(WFH), Haemophilia Awareness Day was first
established in 1989. The date of 17th April was chosen
to honour Frank Schnabel, the founder of WFH, whose
birthday falls on the same date.
Contact
March 2015
Page 12
Help support HFWA by ordering your 2015|2016 Entertainment™ Books and
Digital Memberships through us!
A percentage of every copy or membership sold goes directly to the Haemophilia Foundation WA
(HFWA).
This means that as well as saving you money with up to 50% off or 2-for-1 vouchers, you are also
helping support HFWA in providing support and education to children with bleeding disorders.
What are Entertainment™ Books or Digital Memberships?
The Entertainment™ Books or Digital Memberships are a guide that provides discounts and
special offers for many of the best restaurants, cafes, supermarkets, cinemas, theatres, hotels,
accommodations, attractions, and activities in your local area.
Virtually all of the valuable offers in the Entertainment™ Books and Digital Memberships can be
used throughout the year and are restriction-free and can be used whenever you like.
Participating business include Coles supermarket, Woolworths supermarket, Big W, Kmart,
McDonalds, Subway, KFC, Hog's Breath Cafe, Jetstar, Event Cinemas, Hoyts, Caltex, Rydges
hotels, and many more.
When will the Entertainment™
Books or Digital Memberships
be available?
The Entertainment™ Books or Digital
Memberships will be available in Mid
May.
Keep an eye out for a copy of the order
form in the next newsletter.
Contact
March 2015
Page 13
Kidz Corner
Dates to Remember:
March 2015
Committee Meeting
Women’s Breakfast
Tuesday 17
Sunday 29t
April 2015
Bunnings Sausage Sizzle
World Haemophilia Day
Committee Meeting
Saturday 11
Friday 17
Tuesday 21