Conference Program

Conference
Program
1
Conference Contacts
Role
Name
Phone and email for weekend
Conference
Shari
0411 622 122
Parker
[email protected]
Coordinator
Secretary
Membership
President
Elizabeth
0408 845 546
Beales
[email protected]
Treasurer
Ted
0409 986 583
Merchandise
Thomas
[email protected]
Vendor liaison
Vice President
Kim
0425 229 799
Social events
Gillespie
[email protected]
Youth Program Rachel
0402 458 895
Crèche
Perry
[email protected]
Audiovisual
Tim Boye
0410 864 793
Speaker Liaison
[email protected]
Media Liaison
Bryony
0450 345 450
[email protected]
Chrimes
Competitions
Tanya
0405 727 935
Coordinator
Boye
[email protected]
Fundraising
Patricia
0407 580 777
coordinator
Woodcroft [email protected]
- Lee
Rydges Hotel
02 8268 1888
World Tower
(02) 9262 7927
0437 960 790
Child Care
[email protected]
Level 14, 87-89 Liverpool Street
Sydney 2000
2
Contents page
4
6
21
22
24
27
29
33
35
38
51
54
56
59
60
64
66
At a glance
Conference Details
Ask Me Anything
Code of Conduct
Competitions Corner
Conference Sessions
Crèche
Music
Photography
Presenter Biographies
Social Happenings
Vendors and Stuff to Buy
Venue
What’s Nearby?
Youth Program
Special Thanks
Sponsors
3
At a Glance
Thursday 10th October 2013
Thursday 7pm
Ghost tour of the Rocks – bookings needed
Friday 11th October 2013
12:30pm – 1:30pm
Conference Registration
1:30pm – 4:30pm
Albinism 101
4:30pm – 5:30pm
Conference Registration
5:30pm – 6:30pm
Welcome Reception
Then Informal dinner in local restaurants, depart from hotel
Saturday 12th October 2013
8:00am – 9:00am
Conference Registration
9:00am – 10:30am
Session 1 – Opening Ceremony, Careers,
Personal Story, Technology
10:30am – 11:00am
Morning tea
11:00am – 12:3
Session 2 – Introduction to albinism, Skin,
Albinism and the brain, Research
12:30pm – 1:30pm
Lunch – video presentation on albinism in
UN, Tanzania and Canada
1:30pm – 3:00pm
Session 3 – Guide Dogs, Personal stories,
Resilience, NDIA
3:00 – 3:30pm
Afternoon Tea
3:30pm – 5:00pm
Session 4
Concurrent session 1 – Personal story,
Preparing your child for school, Visiting
support teachers, High schoolers with VI
research, Low Vision Register
Concurrent session 2 – International –
World Albinism Alliance, Under the Same
Sun, Personal stories, Human rights in
Tanzania, Pacific Albinism Project, Albinism in
Fiji
4
5:30pm
6:00pm
Conference Group Photo
Conference Dinner – Bus pick up at 6:00pm
from hotel, Board by 6:45pm
th
Sunday 13 October 2013
8:00am – 9:00am
AFA Annual General Meeting
9:00am – 10:30am
Session 5 – Welcome back, Conference
Registration, Ophthalmology, Transitions
workshop, Personal story
10:30am – 11:00am
Morning tea
11:00am – 12:30pm
Session 6 – Sport, Personal stories,
Hermansky Pudlak Syndrome
12:30pm – 1:30pm
Lunch – Showing of the Movie “Rare”
1:30pm – 3:00pm
Session 7 – O and M, Optometry,
Personal story, Chat groups
3:00 – 3:30pm
Afternoon Tea
3:30pm – 5:00pm
Pain, Personal story, Bioptics, NOAH,
Closing Ceremony
From 5:30pm
After Party – all welcome ☺
5
Conference
details
Friday 11th October 2013
Morning
Harbour Bridge Climb (optional activity) Contact
Kim Gillespie [email protected] 0425 229
799
8:30 –
Albinism Workshop for Professionals
12:30
Chair: Elizabeth Beales
Not included in registration for Fair GO! 2013.
Additional fees apply.
Please contact [email protected] to
register
12:30pm – AFA Fair GO! 2013
1:30pm
Conference Registration
First Timers Workshop (included in conference
registration)
Chair: Elizabeth Beales
1:30pm –
Welcome and Introduction from the Albinism
1:40pm
Fellowship of Australia
6
Friday 11th October 2013
1:40pm – Introduction to albinism – Different types of
3:00pm
albinism, Genetics of albinism
Dr Murray Brilliant
Introduction to the ocular effects of albinism
Professor Gail Summers
- Basic Anatomy of the eye
- Development of vision
- Measurement of visual acuity
- How eye findings contribute to making a diagnosis
of albinism
- Overview of treatment options
- Introduction to the various genetic forms of
albinism
- Function of genes involved in albinism
- How this knowledge can be used to develop new
treatments to improve vision
3:00pm – Afternoon tea
3:30pm
3:30pm – Question time, Panel Discussion
4:30pm
430pm – Conference Registration
530pm
For Fair GO! 2013
5:30pm – Welcome Reception (optional)
6:30pm
Rydges Ballroom, Pre-paid only. Pay as you go drinks
Vacancies available, contact
[email protected]
Followed Informal dinner in nearby restaurants.
by
(Own expense). We will be leaving from the hotel
foyer after the Welcome Reception. We have booked
the upstairs level of Mammas Pizza Pasta Bar, a very
short walk from the hotel, 57 Liverpool Street, Sydney
(Italian, pizza, pasta).
7
Saturday 12th October 2013
From
Conference Registration Desk opens
8:00am
Fair GO! 2013
From
Sign in / Drop off for Crèche (kids aged 1-6)
8:15am
Level 14, 87-89 Liverpool Street, Sydney 2000
From
Youth Program drop off and sign in
8:30am
Meeting Room, Rydges Hotel
8:30am
Merchandise stall opens
9:00am to 10:30am - Session 1
Ballroom 2 and 3
Chair: Elizabeth Beales
9:00am – Opening Ceremony
9:30am
- Acknowledgement of country – Keon Dawson,
Gawurra, St Andrews Cathedral School
- National Anthem – lead by Lauren Dawes
- Official opening Address and Conference Opening Gareth Ward MP
- Welcome by President of AFA – Elizabeth Beales
- Welcome and housekeeping by Conference
Coordinator – Shari Parker
- Conference Photography – Josie Eldred
- Item “You Gotta Be” by Desree, performed by
Lauren Dawes, accompanied by Martin Beales
9:30am – Careers Panel
10:10am
Gareth Ward, Lauren Dawes, Tim Boye
Three successful people with albinism will talk about
experiences at work and study, living with albinism –
a politician, a professional singer and an engineering
student teaching robotics to high schoolers
10:10am – Personal Story – my experiences as a person with
10:20am
albinism as a medical student and a person of colour
Alex Carillo
8
Saturday 12th October 2013
10:20 –
10:30am
What’s new in technology?
3 minute presentations from our vendors outlining
their products, what’s on offer and what’s new in
technology for people with albinism.
Arlene Gerrity will introduce her book “Unique”
10:30am – 11:00am Morning tea
Ballroom 1, Merchandise room and foyer
Book signing with Arlene Gerrity and Margaret Mary Campbell
“Unique” about a robin with albinism
11:00am – 12:30pm – Session 2
Ballroom 2 and 3
Guest Chair: Amanda Smith, from “The Body Sphere” ABC RN
11:00am –
Albinism 101 – The Genetics of Albinism and
11:20am
how we can improve vision in albinism
Dr Murray Brilliant
This session will give an introduction to the various
genetic forms of albinism, the function of the genes
involved and how this information can be used to
develop new treatments to improve vision.
11:20am –
Your skin and albinism – sunscreen, vitamin D,
11:40am
sunburn
Dr Monisha Gupta
- Sunscreen – What’s, how to select, how to use
- Sunscreens and Vitamin D controversy
- Skin checks for People with Albinism
11:40am –
Albinism and the Brain
12:00pm
Dr John McDonald
- Neurodevelopment and albinism
- Association with ADD / ADHD
- Visual perception, memory reading ability in
albinism
9
Saturday 12th October 2013
12:00pm – 12:20pm What’s new in albinism? Research update,
Surgical management
Professor Gail Summers
- Recent research in the field of albinism
- Medication trials to improve vision in
albinism
- Modern management of nystagmus
- Surgical options for albinism - what can be
done and how might it help?
12:20pm – 12:30pm Questions and Panel discussion
12:30pm – 1:30pm Buffet Lunch
Spheres Restaurant
Lunchtime Video – Albinism in the United Nations, Canada, and
Tanzania – Under The Same Sun (Video Presentation) Peter Ash
- What is Under the Same Sun, and where do they work?
- The UN's Report and Resolutions on albinism
- The campaign to end advertisement and sale of "Albino Rhino pale ale" at all Earl's
restaurants in Canada and the U.S.A.
UTSS’ first holiday camp
1:30pm bright– 3:00pm – Session 3
Ballroom 2 and 3
Chair: Bryony Balaton-Chrimes
1:30pm –
Guide Dogs and Albinism – Guide Dog Mobility
1:50pm
– Myths and Facts
Michael Poynting
- The person, the dog, who does most of the
work?
- Will all people with a vision impairment have
their mobility needs met by using a guide dog?
- Guide Dogs or canes, which is best?
1:50pm –
Personal Story – my life with a Guide Dog – Me
2:00pm
and Helinka
Tanya Boye
10
Saturday 12th October 2013
2:00pm –
2:10pm
2:10pm –
2:30pm
Personal Story
A short biographical poem Phil Latey
Albinism and Resilience
Margaret Mary Campbell
I have albinism SO WHAT?
S – Self talk
O – Own it
W – Why?
H – Humour
A – Acceptance
T – Teach and Trust
2:30pm – National Disability Insurance Scheme – what does
2:50pm
it mean for people with albinism?
Dougie Herd
- The National Disability Insurance Scheme Overview
- Progress of the Scheme
- What it means for people with albinism
2:50pm – Questions and Panel Discussion
3:00pm
3:00pm to 3:30pm – Afternoon tea
Ballroom 1, Merchandise room and foyer
3:30pm – 5:pm – Session 4
Concurrent session a)
Ballroom 2
Chair: Rachel Perry
3:30pm – Personal story – Experiences of living in rural and
3:40pm
metropolitan Australia with two children with albinism
Karissa Harp
3:40pm – Preparing your child with low vision for School
4:10pm
Maria Lupton and Karen Cutts
- Literacy and Numeracy
- Independence
- Using low vision aids
11
Saturday 12th October 2013
4:10pm – Visiting Support Teachers – working in partnership
4:30pm
with the Itinerant support teacher
Pru Jobling
- The role of the ISTV
- How to develop a good working relationship.
- Issues related to support and funding available, role
and responsibilities,
- Expanded core curriculum
- Individual learning plans
- Introducing technology options to enhance learning
3:30pm – Research Project on High Schoolers with low
3:40pm
vision
Glenda Jessup
- This current study looks at the everyday experiences
of high school students who are visually impaired and
attend mainstream schools.
- iDevices and the Experience Sampling Method, an inthe-moment survey method, to understand the
students’ experiences of everyday life.
- Preliminary data will be presented to show the types
of information that can be gleaned.
- This study provides a new and different opportunity
for these students to be given a voice in research.
4:40pm – The Australian Low Vision Register
4:50pm
Sue Silveira
- Scope of childhood vision impairment in Australia
- Key aspects of vision impairment in children with
albinism
4:50pm – Questions and Panel Discussion
5:00pm
12
Saturday 12th October 2013
Concurrent session b)
Ballroom 3
Chair: Bryony Balaton-Chrimes
3:30pm – World Albinism Alliance – an organisation bringing
3:35pm
together albinism organisations around the world
Shari Parker
Describes formation of the WAA which brings together
albinism organisations from around the world.
3:35pm – Albinism in Canada and Tanzania – Peter Ash –
3:40pm
Founder and CEO of "Under the Same Sun" (UTSS) –
Peter ash sends greetings to the AFA conference
attendees and briefly explains the types of work UTSS
does around the world.
3:40pm – Personal Story – On being the meat in the white
3:50pm
bread sandwich, and albinism in Kenya KACSU
Melanie Boulton
3:50pm – Personal Story – The Albinism Charity Drive, and my
4:00pm
two children with albinism
Maxine Krebs
4:00pm – Albinism and Human Rights in Tanzanian Print
4:15pm
Media
Dr Jean Burke
Aimed at those interested in Africans with albinism, to
inform them of what is being said in Tanzanian English
and Swahili media
- Human rights issues and responses
- Encouraging actions by Tanzanian government and
society
- Social change occurring
- Research and activist networks
13
Saturday 12th October 2013
4:15pm – Pacific Albinism Project (PAP)
4:40pm
Helene Johanson and Annette Ferguson
- Summary of genetic and social research findings
- What we have achieved so far
- Our plans for the future
4:40pm – How common is albinism in Fiji – early experiences
4:50pm
with the albinism in Fiji incidence survey
Dr Margot Whitfield
Describes background to albinism in Fiji incidence study
4:50pm – Questions and Panel discussion
5:00pm
5:30pm
Conference Group Photo – Rydges Foyer
Sharp
Please collect your children quickly and gather at the
hotel for a conference group photo
Conference Dinner Sydney Harbour Cruise
Bus Collection from 6pm
Rhythm boat, Departs from Pyrmont Bay Wharf
Vacancies still available Adults: $65, Children $45
Email [email protected] to book
Boat boarding 6:45pm sharp
The evening will feature a buffet meal, music and live hook up with
the UK Albinism Fellowship conference, also on this weekend
14
Sunday 13th October 2013
8:00am – Annual General Meeting of the Albinism
8:45am
Fellowship of Australia Ballroom 2 / 3
From
Sign in / Drop off for Crèche (kids aged 1-6)
8:15am
Level 14, 87-89 Liverpool Street, Sydney 2000
From
Youth Program drop off and sign in
8:30am
Meeting Room, Rydges Hotel
8:30am
Merchandise stall opens
9:00am to 10:30am - Session 5
Ballroom 2 and 3
Chair: Elizabeth Beales
9:00am – Opening of day 2
Welcome back!
9:10am
Marimba Solo “Csárdás” by Vittori Monti, written in
1904, performed by Mathew Zhou (aged 10),
accompanied by Cindy Sin
9:10am Albinism and your ophthalmologist – how to get
9:30am
the most out of your appointment with your
ophthalmologist – includes 5 question time
Dr Frank Martin
This presentation is aimed at individuals with
albinism and their family.
- I will cover: Visual impairment, Problems with
glare, Nystagmus, Strabismus, Refractive error
- The role of the ophthalmologist in overcoming the
impact of visual impairment
9:30am – Transitions Workshop
10:30am
Rachel Perry, Bryony Balaton-Chrimes, Shari
Parker, Kim Gillespie, Marie Bedford
A workshop examining the differ points of transition in a
PWA’s life – from preschool to school, to highs school, to
further study, to work, to parenthood, and beyond. Handling
transitions well is essential for managing that next phase of
life, and here you will get some great tips for now and the
future. Includes time for questions and panel discussion.
15
Sunday 13th October 2013
10:30am – 11:00am Morning tea
Ballroom 1, Merchandise room and foyer
Ask questions or sign up for Living with Vision Impairment High
Schoolers Study – Glenda Jessup
11:00am – 12:30pm – Session 6
Ballroom 2 and 3
Chair: Ted Thomas
11:00am – Sport and albinism – I have albinism – what sports
can I do?
11:20am
Kara Retford, Australian Paralympic Committee
- Paralympic Committee – who we are?
- How we can assist you?
- Are you eligible to compete in Paralympic Sport?
- How do you get classified for Paralympic Sport?
11:20am – Personal story Our athletics journey, throwing your
11:30am
heart out!
Benj and Danielle Gulliford
11:30am – Personal Story – Me, myself and my lawn bowls
11:40am
Marian Morrison
11:40am – Hermansky Pudlak Syndrome
11:50am
Opening scene of the movie “Rare”
Rare is a feature documentary that follows Donna
Appell an inspirational and extraordinary mother,
and her daughter Ashley, known personally to
several from the AFA, as they unite a group of
isolated people from around the world connected
through Hermansky Pudlak Syndrome (HPS), a rare
genetic form of albinism. Together, they discover
that community, laughter and hope are some of the
greatest therapies.
16
Sunday 13th October 2013
11:50am –
12:10pm
12:10pm –
12:20pm
12:20pm –
12:30pm
Clinical and Laboratory assessment in HPS
Dr Tim Brighton
The talk with discuss the importance of platelets in
blood clotting, as well as discuss the clinical features
of HPS, laboratory assessment of platelet function,
and management issues.
Personal Story – on having a daughter with HPS
Nicole Tobin Donnelly
Questions and Panel Discussion
12:30pm – 1:30pm Buffet Lunch
Spheres Restaurant
Lunchtime Movie “Rare” in Ballrooms 2 and 3
1:30pm – 3:00pm – Session 7
Ballroom 2 and 3
Chair: Kim Gillespie
1:30pm –
O and M Instructions and Low Vision Clinic
1:50pm
Andrew Doyle and Cathie Wiltshire
- Targeted towards individuals with low vision, and
their families, and professionals who work with
people with low vision
- What orientation and mobility is and how it can
help
- Low Vision clinic, what it is and how it can help
- Other Guide Dog aids and services
- How to make a referral
17
Sunday 13th October 2013
1:50pm – 2:10pm
Optometry and albinism – Getting the
most out of your Optometry appointment,
and the lowdown on contact lenses for
people with albinism
Dr Jack Phu
- What do optometrists do for patients?
- How can spectacles and contact lenses
help the patient with albinism?
- What types of contact lenses are there
and what are their differences?
- How does the fitting process work for
contact lenses?
2:10pm – 2:20pm
Personal Story Robyn Blake
2:20pm – 2:30pm
Questions and Panel Discussion
2:30pm – 3:00pm
Your chance to catch up for an informal
chat around topics of interest (facilitator for
the group in brackets)
- Families of pre-schoolers (Karissa Harp)
- Families of primary schoolers (Rachel
Perry)
- Families of high school aged kids (Tim
Bellamy)
- Younger adults with albinism 15-30
Margaret Mary Campbell)
- Parenting without pigment (Kim
Gillespie)
- Adults with albinism (Elizabeth Beales
and Mike McGowan)
3:00pm to 3:30pm – Afternoon tea
Ballroom 1, Merchandise room and foyer
18
Sunday 13th October 2013
3:30pm – 5:00pm – Session 8
Ballroom 2 and 3
Chair: Martin Beales
3:15pm – Pain in Albinism – Is Albinism really a pain in the
3:30pm
neck? Results from the pain in albinism study
Dr Shari Parker
- What we know about pain in albinism
- Results of pilot study will be presented
- How common is headache and neck pain in PWA?
- What are factors the increase and decrease risk of
headache and neck pain?
- How to prevent / reduce headache and neck pain
3:30pm Personal story - My experiences as a person with
– 3:40pm albinism who drives and is an Occupational Therapist
Becca Evans
3:40pm – Bioptic Driving – Driving with a central vision
4:00pm
impairment in Australia – where do we stand?
Sharon Oberstein
- In Australia, private conditional driver's licenses
may be issued for individuals with visual acuity
worse than 6/12 to 6/24.
- In countries overseas individuals with visual acuity
worse than 6/24 drive with the use of bioptic
telescope spectacles.
- Explain the current visual requirements for driving
in Australia
- Outline strategies used for driving with poor acuities
overseas, with special reference to bioptic telescope
spectacles.
4:00pm – NOAH – Words of wisdom and experience from the
4:15pm
President of NOAH
Mike McGowan
19
Sunday 13th October 2013
4:15pm – Closing Ceremony
5:00pm
- Musical Item – “Roar” by Katy Perry, performed by
Jacob Raffoul
- Announcement of prize winners
- Performance from the Youth Program
- Closing words from the President
- AFA conference 2015 – where will it be???
From
After Party – all welcome to attend
5:30pm
Ballroom
Included in the cost of your conference registration
Performances by Lauren Dawes, Jacob Raffoul Mathew
Zhou
Conference Program may change without notice due to
circumstances outside our control
20
Ask Me
Anything!
Conference Committee
For anything conference related, please find someone in a bright
blue conference committee shirt. If they don’t know the answer,
they will find someone who does!
Colourful Leis
There will be a lot of people at the conference for whom
albinism is quite new and maybe even a bit daunting. They may
not feel comfortable asking questions, worried it might be the
wrong question, or cause offence. If someone is wearing a
colourful lei, other than looking very tropical, they are happy to
be asked anything related to their experience with albinism.
If you are a person with albinism, or a family member of
someone with albinism and feel comfortable being asked
questions of any sort related to albinism, ask for one of our
colourful Leis when you register for the conference.
Registration.
Leis kindly donated by Party Time Cairns.
21
Code of
Conduct
Welcome to the Albinism Fellowship of Australia “Fair go!” 2013
conference. The AFA is committed to making a safe and happy
conference environment for everyone. Please take a moment to
read through this code of conduct so you are familiar with what
kind of behaviour is expected and hat type of behaviour won’t
be accepted.
If you go outside the code of conduct, a member of the
conference committee will give you an official warning. If you
continue, you will be immediately banned from attending the
rest of the conference. If necessary, we will involve venue
security.
The following guidelines apply to all attendees.
1. Respect yourself and others.
2. Unwelcome behaviour won’t be tolerated, whether this
behaviour is directed to fellow conference attendees,
presenters and speakers, AFA executive committee and
conference committee members, crèche and youth program
volunteers and all venue staff. Unwelcome behaviour includes
22
but is not limited to, intimidation, aggression, harassment,
abuse, and discrimination.
3. Refrain from the use of profane or inappropriate language in
the presence of children.
4. Dog guides love their work and when they are working they
must focus only on their handler who will give them plenty of
pats, praise and attention and perhaps even a treat or two.
Because of this, it is important that when they are working,
you do not pat, talk to or interact in any way with them,
without first asking the handler for permission. This includes
touching the dogs, reaching out, telling them what a great job
they’re doing and making clicking noises. You can tell a dog
guide is working by the presence of their working harness.
5. When taking photos, be mindful that flash photography can be
extremely uncomfortable and unpleasant for people with
albinism.
6. Seek consent when taking the photo and before uploading to
a social media site (especially photos involving children).
7. Introduce yourself – it can be extremely useful to introduce
yourself by name to a person with albinism. They may not be
able to see your name tag or recognize your face, and it saves
embarrassment!
8. Please phones to silent or vibrate while in conference
sessions.
9. There may be babies aged 1 and under at the back of the
conference area. This is a family friendly conference, so
please make allowances for an acceptable degree of noise. If
your child is making a very large noise during the conference
session, please step out of the room till more settled.
23
We look forward to having a terrific conference!
Competitions
Corner
We have four wonderful ways that you can come away with
goodies from the conference – four competitions and some great
lucky door prizes.
The competitions table will be co-located with the AFA
merchandise table, so pick up some other goodies while you’re
there!
1. Conference Raffle
In addition to the Valvoline raffle, we will also have a second
raffle with a range of wonderful goodies. Tickets will be available
at the conference only!
Winners will be drawn during the closing ceremony of the
conference
24
Prizes include:
- Glass sculpture – various pieces – donated by “Aunt Agi”
- Handmade jewellery pieces – donated by Tanya Boye
- Long scarf / runner in yellowy orange colours from Timor –
donated by Patricia Woodcroft-Lee
- AFA IPad cover – donated by GO Promotions
- Osteo Exercises – donated by Rose Pierse
- QuickBooks * 2
- Soft buttery brown / sage coloured handbag – donated by
Bryony Balaton-Chrimes. Value $120
- Speccles – donated by Amy Mochi
- Handmade blanket featuring a row of cats – made by
Margaret Ryan
- Avon Gift Bag – donated by Melanie Boulton
- Huge box of books for kids – donated by Simon and Rebecca
Bradley
- Kindermusik CDs – donated by Nicole Tobin-Donnelly
- Red purse – donated by Bryony Balaton-Chrimes
- Four individual mugs, Ashdene and Williams Brand, bone
china, boxed. Guide God Puppies, and other images –
donated by Marie Bedford
- Set of two Science Fiction books “Time Machines Repaired
While U Wait” by KA Bedford (winner of Aurealis Australian
Award for The best SCi Fi Novel 2008) and “Paradox
Resolution” by KA Bedford (shortlisted for the Aurealis award
2009)
- Book “Mother Love” about emotional adjustment to
parenthood, Written and donated by Dr Melanie Strang
- Picture book “Unique”, signed by the authors, about a robin
with albinism by Arlene Gerrity and Margaret Mary Campbell
25
2. Silent Auction
Throughout the conference, you can bid on some beautiful,
priceless handmade goodies. You are allocated a “bidding
identification number”, against which you write your bid on a
clip board. Come back and check to see if you have been outbid,
and make another bid…..if you dare!
Prizes for silent auction:
i. Handmade Very Hungry Caterpillar Quilt – made and
donated by Lyn Thomas
ii. Handmade quilt and pillow cases in bright autumnal
colours, pinks and greens – made and donated by Cathy
Perry
iii. Set of 2 handmade owl necklaces – made and donated by
Jennifer Adam
iv. Set of 3 pieces of hand crafted Glassware – Metallic Cuff
links, Aqua foil stud earrings and red hairclip
3. Vision Impaired Guessing Competition
A tactile guessing competition, where the people with low vision
have the advantage! Guess how many yummy jelly beans are in
the white bag. If you are the closest, you get all the jelly beans.
Yummo!
4. Valvoline Raffle
Raffle sponsor - The prizes for this raffle have been donated by
Valvoline Australia.
26
Prizes
1st Place - A framed cricket bat signed by Ricky Ponting,
estimated market value of $300
2nd Place - Valvoline cold weather jacket valued at $100
3rd Place - Valvoline NextGen Backpack valued at $30
Cost of tickets
$3 per ticket or $20 for a book of 10
Raffle will be drawn during the closing ceremony of the
conference
Conference
Sessions
Structure
- On Saturday and Sunday, there are four sessions, each 90
minutes long. These have been numbered from one to
eight.
- Morning and afternoon tea breaks are 30 minutes, and lunch
breaks are 60 minutes.
- The last session of Saturday (session 4) will be a concurrent
session, where you can choose to go to a session aimed at
parents, or a session with an international theme.
Question time
27
For most conference sessions, there will be a combined question
time / panel discussion at the end of the session to maintain the
flow of proceedings. We suggest that you note your questions
during the sessions so you can ask them at the end.
There will be two ways for you to ask your questions:
1. There will be several microphones on stands adjacent to
chairs in the aisles of the room. If you would like to ask a
question, please line up behind one of these, and ask
your question
2. If you would prefer, you can SMS / text your question
and it will be asked on your behalf.
Please indicate to whom you are asking the questions or making
a comment. If there are a lot of people wanting to ask
questions, due to limited time, the chair of the session may ask
you to continue the discussion with the presenter in the break.
Returning from breaks – as it is a tight conference schedule,
we respectfully ask that you make your way back into the
conference hall when you hear the music “Shout!”
Conference Committee members can be identified by their
blue shirts. Please ask us for any help you need.
28
Crèche
The Crèche is being held at World Tower Child Care which is in
the next door building. They have very kindly sponsored our
conference by providing the centre and basic staffing for the
weekend.
The purpose of the crèche it to enable parents to have the
opportunity to learn and interact with others from the albinism
community while being confident that the children are receiving
professional care. At the same time, the children get to play and
learn with other kids with albinism, and siblings and children of
people with albinism in a fun, caring and safe environment.
Please note that the crèche will run during the Saturday and
Sunday of the conference only. For those bringing children to
the Friday session, we will be providing a television and child
friendly video during the Albinism 101 Workshop. It is likely that
there will be an adult supervising this, but you will maintain
responsibility for your children during this session
Paperwork
Prior to the conference, you should have provided the centre
with a casual enrolment form with information about your child
to the centre. Spare forms will be available on the day. You
should have also sent copies of immunisation record and birth
certificate beforehand to the centre. You can also bring them
with you on the day.
29
Crèche hours
Sign in is from 8:15am each morning to enable you to settle
your child/ren before heading off to the conference which will
start at 9am sharp. There will be a sign in sheet at the front
door with the names of the children attending for the day,
Children are to be collected at or before 5:30pm and we will
ensure that the sessions do not run overtime.
Once children are dropped off, it is better not to come back and
visit until pick up time, as this may make them unsettled. Staff
will call you if children are inconsolable. This is your time to
learn and connect, and their time too!
Finding the Centre
The address of World Tower Child Care is
Level 14, World Tower Commercial Building
87 -89 Liverpool Street, Sydney
The entrance is near George Street. It is between Hype Shoe
store and World Tower Residential and has a blue sign “World
Tower Commercial Suites” out the front.
The glass doors at the ground floor entrance may be closed
throughout the weekend. In order for you to gain access to the
elevators, you will need to buzz the centre on the intercom
located on wall on the left hand side in front of the glass doors.
Please press “1401” and then the button with the picture of the
bell. This will call the centre upstairs and they can unlock the
door once you are identified.
30
Take the elevator to Level 14 and turn left. You will see secure
glass doors with World Tower Child Care. Staff will let you in and
check identification. You can then sign your child/ren in, settle
them in, and head off for a great day at the conference.
Mobile Phones:
Please have your mobile phones accessible whilst their child is at
the centre on silent, or set to vibrate.
In the event of an emergency, our staff will be calling parents
first, followed by emergency contacts (as indicated in their
enrolment form) if they are not available. Our assembly point in
the event of an evacuation is Hyde Park – if this situation arises,
we will have children’s enrolment forms with us and will contact
families from that point.
What to bring
Completed enrolment form if necessary
Copy of immunisation record, if
Copy of birth certificate copy if necessary
Bottle / formula if needed (all other drinks provided)
Dummy / soothing toy if needed
Sunhat
What will be provided?
Morning tea
Lunch
Afternoon tea
Other snacks if needed
Linen
Nappies
Activities and lots of fun!
31
Planned activities
We have kids aged from just under 1 to 6 at the crèche, and a
good mixture of children with albinism and children with normal
pigmentation. Activities will be planned according to the age and
development of the children.
For example, Playdough, art and craft, free play, puzzles,
drawing, music, story reading by Arlene Gerrity of the book
“Unique” about a little robin bird with albinism, free play and
lots lots more!
Centre Contact
The centre contact detail should you need to contact them
during the conference, or beforehand:
Phone 02 9262 7927
Mobile 0437 960 790
Email [email protected]
Staffing
The Crèche will be staffed by a mixture of staff of World Tower
Child Care and Volunteers who have valid working with children
clearances if needed (we have mature older teenage family
members helping).
Everyone has been briefed on albinism, the key features, how
kids with albinism are different, what their special needs are in
terms of appropriate toys, lighting and so forth. The ratio of
staff to children will be high – approximately 1 staff to 2-3
children, depending on age.
32
Music
Return from break music – When you hear the music
”Shout!”, it’s time to return from break!
Conference theme song: The theme music you will hear
played at various times throughout the conference is Bruno
Marcs’ “Count on Me”, reflecting how important support and
friendship is within the albinism community.
Australian National Anthem
Australians all let us rejoice,
For we are young and free;
We’ve golden soil and wealth for toil;
Our home is girt by sea;
Our land abounds in nature’s gifts
Of beauty rich and rare;
In history’s page, let every stage
Advance Australia Fair.
In joyful strains then let us sing,
Advance Australia Fair.
Beneath our radiant Southern Cross
We’ll toil with hearts and hands;
To make this Commonwealth of ours
Renowned of all the lands;
For those who’ve come across the seas
We’ve boundless plains to share;
33
With courage let us all combine
To Advance Australia Fair.
In joyful strains then let us sing,
Advance Australia Fair.
Albinism songs
Some “tongue in cheek” songs relevant to people with albinism
– please tell us some more!
Dancin’ in the moonlight
I wear my sunglasses at night
Blinded by the light
Future’s so bright, I gotta wear shades"
Here comes the sun
Baz Luhrmann – Everybody’s free to wear sunscreen
I’m dreaming of a white Christmas
Whiter shade of pale
Blurred Lines
Tis the season
By Ashley Appell (See her in the movie showing of “Rare” at
Sunday lunch
Tis the season to wear sunscreen
Fa la la la la la la la la
Fif-ty to one hundred plus
Fa la la la la la la la la
Drown me now the lotion shower
Fa la la la la la la la la
May it help a burning blunder
Fa la la la la la la la la
34
AFA Anthem
Albinos all let us rejoice,
For we are blonde and free!
We’ve golden hair and wobbly eyes –
Our eyes are girt by specs.
We all abound in nature’s gifts,
Of beauty rich and fair
In medical pages, let every stage
Advance albinos fair!
With eyeball strains, then let us sing,
Advance albinos fair!
By Kim, Annette, Liz and Shari
Photography
Official conference photographer
We are privileged to have Josie Eldred as our official Conference
photographer. She will be taking photos of conference attendees
casually, in the crèche program and in the youth program, as
well as doing portrait shots of family and friends at set times
which will be announced during the proceedings. She will also
have the mammoth task of “herding cats” and taking our big
group photo 5:30pm on Saturday – after collecting children,
plan to return to the foyer and be part of history!
35
After the conference, we will provide you with digital proofs of
photos taken by Josie at Fair GO! 2013. You can choose which
once to purchase at a small fee (maximum $2 per photo).
Send us your photos!
If you have a wonderful photo you would like to share with the
AFA community, you could paste it to our conference “FairFF
GO! 2013” or AFA Facebook page, or you would email it to
[email protected] so they can be used for the
AFA archive and publications.
Photo Etiquette –see code of conduct for suggestions when
taking photos of people with albinism and others at the
conference.
Videoing of the conference
Thanks to a wonderful fundraiser put on by the Blaiks from
Geelong, this conference is being professionally videoed.
These will be after the conference. When moving around, be
mindful of where the cameras are and be cautious of the
cabling.
Josie Eldred
I'm a 22 year old nature photographer who's
been living in the Blue Mountains for the past 14
years. I've been sick with a chronic illness called
Myalgic Encephalomyelitis for a long time and I
first delved into photography around 6 years
ago when I decided I needed a hobby that
wouldn't demand too much exertion from me.
36
Since then I've become an extremely passionate macro
photographer, although I also enjoy photographing my pets, zoo
animals and local fauna. I also run a photographic project called
Making The Invisible Visible which attempts to remove the stigmas
and ignorance surrounding invisible conditions; I'm incredibly
passionate about generating more understanding around these
conditions and giving people a forum to talk about their experiences
of people ill. See http://mtiv.org
When I'm not absorbed in photography I spend time working on my
media communications degree, hanging out with friends, blogging,
reading comics and watching Pixar films.
37
Presenter
Biographies
Ash
Peter Ash is CEO and founder of Under The Same Sun
(UTSS), an international Non-Government Organization with
offices in Vancouver, Canada and Dar es Salaam, Tanzania.
He holds an undergraduate degree in Theology and a
graduate degree in psychology. His background includes a
decade of work in church ministry followed by over a decade
in a global finance business as owner and CEO.
Being a person with albinism himself, Peter could not stand
by and do nothing when, in 2007, the news about atrocities
being committed against his brothers and sisters with
albinism in Tanzania due to their genetic conditions, reached
Canada. Since then he has established an office with 20
Tanzanian staff, over half of whom are persons with
albinism. Peter is a passionate philanthropist and
entrepreneur.
At present his primary involvements are in commercial real
estate and Under The Same Sun. As a result of Peter's faith
background and disability, his heart drives him to do
whatever he can to provide resources to assist those most
disadvantaged by disability, discrimination and poverty. His
current passion is to see the status of all persons with
albinism in Tanzania elevated to its rightful place in their
country and culture through the use of advocacy and
education. This vision has recently taken on a more panAfrican and global perspective
38
Brighton
Dr Tim Brighton
- Bachelor of Medicine, Bachelor of Surgery (1984); Fellow of the Australasian
College of Physicians (1995); Fellow of the Royal College of Pathologists Australasia
(1995); Doctor of Medicine (1999)
- Senior Staff Haematologist at Prince of Wales Hospital in Sydney
- Conjoint Senior Lecturer in Department of Medicine Prince of Wales Clinical School
& School of Pathology, Faculty of Medicine, University of NSW, Kensington, Sydney.
- Honorary Associate at the NHMRC Clinical Trials Centre, University of Sydney.
Tim completed his medical and haematology training in Sydney... Current research
interests include immune thrombocytopenia, assessment of platelet function (with
focus on electron microscopy), bleeding disorders, thrombophilia, diagnostic
techniques in venous thrombosis and clinical therapies in the prevention and
treatment of thrombotic disease
Brilliant
Dr Murray Brilliant PhD
PhD, Molecular, Cellular and Developmental Biology,
University of Colorado, Boulder, Colorado USA
Director, Centre for Human Genetics and James Weber
Chair, Director of the Personalized Medicine Research
Project, Marshfield Clinic Research Foundation, Marshfield,
Wisconsin, USA
Dr. Brilliant is a Senior Research Scientist with 29 years of
experience in genetic research with a specialty in albinism
and complex trait genetics and holds the James Weber
Endowed Chair at the Marshfield Clinic, where he directs the
Centre for Human Genetics and the Personalized Medicine
Research Project (PMRP). Dr. Brilliant has identified three of
the genes associated with albinism. In addition to albinism,
Dr. Brilliant studies the genetics of common eye disorders
such as glaucoma, macular degeneration and cataract.
39
Burke
Dr. Jean Burke
Bachelor of Social Work (University of New South Wales),
Diploma in Education (University of New England), Master of
Social Work (Charles Sturt University), Doctor of Philosophy
(University of New South Wales)
Lecturer, School of Social Work, Australian Catholic
University
I lived in Tanzania 1992-2003 with my family, supported by
the Anglican church, in villages and the capital city, working
mainly with people with HIV. I am now a Swahili translator
and social work lecturer. Since a friend showed me news
online about the attacks on Tanzanians with albinism I have
been collecting news articles and literature about the issues
affecting them and how the government and society are
responding. Tanzanians with albinism are my main research
concern: I have made presentations at conferences in South
Africa and Uganda and have 2 journal articles being
published (so far).
Campbell
Margaret Mary Campbell is a person born with albinism and
long-time friend of the AFA. She is a retired elementary
school teacher. Since retiring she has been actively working
with children who also have albinism. Because of many
myths, and negative portrayals of albinism in the media, she
felt a need for children to see an honest and accurate images
of albinism in literature and the media. She partnered with
her friend Arlene as a “technical advisor” in the writing of the
story of “Unique”, a little Robin born with albinism.
40
Cutts
Karen Cutts
- Bachelor of Teaching (early Childhood), Graduate
Certificate in Educational Studies, Sensory Disability
- Teacher Consultant (Vision Impairment) RIDBC Early
Learning Program (Vision Impairment)
I have worked in the field of Early Intervention for the past
10 years, specializing in vision impairment and blindness for
7 years. I am also a mother to three girls ranging in age
from 4 to 13 years old. I am passionate that all children
should have opportunities to become the best they can be
and that all children can access a curriculum at their level.
Dawes
Lauren Dawes
I'm a 29 year old Singer from Marrickville who grew up on
the Iconic Northern Beaches of Sydney. I am the youngest of
4 children, one of which my Older sister Carlie also has
Albinism.
I went through both Primary and High school always playing
music in all different bands and choirs. This led me to being
accepting into the Talent Development Program 2000-2001.
I also have been involved In The Jubilation Group for 13
years which has had me perform at many Festivals and
stages all over Sydney and OS.
Just Last year, I was a contestant on The Voice AU.
Onwards and Upwards.
Doyle
Andrew Doyle
- Bachelor of Applied Health Science/ Orthoptics (University
of Sydney), Masters in Special Education (University of
Newcastle)
- Orientation and Mobility instructor at Guide Dogs
Previously worked as an orthoptist in private practice, since
2010 have worked at Guide Dogs training clients to use low
vision aids to orientate safely to their destinations
41
Ferguson
Annette Ferguson, mother of two, person with albinism, and
long term member of the world wide albinism community
has created resources to aid in the understanding of how
people with albinism see the world.
Annette and Helene formed a team in 2009 and created the
Pacific Albinism Project website, one of the most valuable
albinism resources online and a place where they blog about
their achievements in helping Islanders with albinism.
Gerrity
Arlene Gentry loves to read to children. She has been
reading to the children of the Scranton School District (PA)
and other local school districts since 2005. After her
retirement of ten years as a teacher’s aide, she published
her own children’s book entitle “The Tale of Chicken Noodle
and Rabbit Stew Number Two”.
“Unique” is the first book she both wrote and illustrated.
Arlene and Margaret met in 1995 and became good friends.
Image from cover of
“Unique”
Gupta
Dr. Monisha Gupta
-
Doctor of Medicine, Fellow of the Australasian College of
Dermatology.
Staff Specialist at the Skin and Cancer Foundation Australia,
Darlinghurst (SCFA).
Works part-time as a Staff Specialist at Liverpool Hospital and
at private practices in Campbelltown and Chatswood.
Conjoint senior lecturer at the University of NSW and a guest
lecturer at the University of Western Sydney.
Monisha has over 20 years of international experience as a
specialist dermatologist. Her main areas of interest are chronic
diseases and dermatology like Acne, Eczema, and Psoriasis. She
also has a strong interest in pigmentary disorders. She enjoys
working with the challenges that she encounters in the diverse
populations. Monisha has initiated and manages a dedicated
Pigmentary disorders clinic at the SCFA. This clinic provides care
for patients with both loss of pigment in the skin and increased
pigmentation. Monisha is also passionate about dermatology
teaching and training. She is the Director of Training for NSW.
42
Herd
Dougie Herd, Branch Manager, Communications and
Engagement, National Disability Insurance Agency (NDIA)
Dougie Herd works for the National Disability Insurance Agency
(NDIA), the agency implementing the National Disability Insurance
Scheme, as the branch manager with responsibility for Research
and Engagement in the national office. Dougie joined the agency
in October 2012. Before joining the NDIA, Dougie worked for two
years as the project manager of the NSW Industry Development
Fund, managed by National Disability Services NSW, six years as
the Executive Officer of the Disability Council of NSW (the state’s
official advisory body), and for five years as the EO of the Physical
Disability Council of NSW (a state peak and advocacy
organisation). Since arriving in Australia in 1999, Dougie acquired
work in the non-government disability advocacy and service
provider sectors, State Government advisory role and now
through NDIA in the Australian Public Service.
Dougie was born in Glasgow, Scotland, and has been a wheelchair
user for 29 years.
Jessup
Glenda Jessup
- Master of Applied Science (University of Sydney)
- Bachelor of Applied Science with Distinction (Leisure &
Health) (University of Sydney)
- PhD candidate University of Sydney
Glenda’s background is in Leisure and Health. She worked
for a number of years at Vision Australia before moving to
full-time research. Her master’s thesis looked at the benefits
of leisure to young people who are visually impaired and led
to her current PhD research on the everyday experiences of
high school students who are visually impaired.
As one who well understands the benefits of leisure, Glenda’s
leisure interests include singing, swimming and playing with
her grandchildren.
43
Jobling
Pru Jobling
- Bachelor of Art, Diploma of Education, Master of Special
Education (Vision)
- Itinerant Support Teacher Vision, Department of
Education and Communities (DEC), Central West NSW
Pru Jobling lives in the Blue Mountains NSW and has worked
in a variety of roles in education and vision impairment. She
has a Masters of Special Education – Vision from Griffith
University.
Initially she studied visual art and trained as a high school
art teacher. Following an interest in vision impairment, Pru
later worked with the Royal Blind Society (now Vision
Australia) in their recreation programs.
When the opportunity arose to work with the Catholic
Education Office, as an Itinerant Support Teacher Vision, it
seemed like the perfect way to combine her skills and
interests. Pru worked in that role for 14 years. In 2006 she
took a break from the commute to Western Sydney and
worked for a term with the Northern Territory Education
Department as an Advisory Teacher – Vision. In 2008 she
accepted a position with the DET Western Region as an
Itinerant Support Teacher Vision and is still working in that
role part time. Pru also worked at Nirimba TAFE supporting a
student who is Deaf and blind to complete studies in
Community Services.
Pru enjoys working with students of all ages, and their
families. Her particular interests are assisting students to
develop positive self-esteem, and realise their dreams and
potential. She believes it is important that students
understand their vision impairment, become successful selfadvocates, experience a range of life interests and are open
to the options and choices available to them. Pru is also
excited by the opportunities for learning that new technology
can provide.
This is a link to a document with wonderful resources
for high school and tertiary students, teachers,
parents:
https://dl.dropboxusercontent.com/u/8023034/Visiti
ng%20Support%20Teachers%20Resources%20for%
20school%20and%20further%20education.docx
44
Johanson
Helene Johanson
- Bachelor of Science
- Advanced Diploma of Biological Laboratory Techniques
Helene Johanson, mother of three, genetics researcher and
long term supporter of the albinism community
conducted, research into the incidence of albinism in
a Polynesian community. Her findings were published in the
Journal of Human Genetics in 2010. The Pacific Albinism
Project evolved from her findings and her firsthand
experience working in the Pacific Islands where she became
aware of the limited knowledge of albinism available to the
Islanders with albinism.
Lupton
Maria Lupton
- Bachelor of Teaching (Early Childhood); Graduate
Certificate Sensory Disability Visiting Support Teachers –
working in partnership with the Itinerant support teacher
- Teacher Consultant (Vision Impairment) RIDBC Early
Learning Program (Vision Impairment)
I have worked in the Early Childhood field for thirty years
and the disability field for 16 years and have been working
at RIDBC for seven years. I will complete my Masters in
Sensory Disability this year
MacDonald
Associate Professor John MacDonald completed medical school at
the University of Michigan, followed by a paediatric residency and
then fellowship training in paediatric neurology, and is currently
an Associate Professor of Neurology and Paediatrics. Associate
Professor MacDonald has a longstanding interest in paediatric
neuro-ophthalmology and visual neuroscience.
Over many year, Associate Professor MacDonald has collaborated
with Professor Gail Summers on studies of children with visual
disorders, and most recently several studies have investigated
neurological issues in children and adults with albinism. These
studies have examined possible relationships between individuals
with albinism and developmental disorders, attention deficit
hyperactivity disorder (ADHD), reading abilities, and visual spatial
spills.
45
McGowan
Mike McGowan
- Executive Director NOAH, National Organisation for
Albinism and Hypopigmentation
- Masters of Science, Management of Public Service, DePaul
University in Chicago.
Following a 30 year career in local government service as an
information technology professional working in court
management Mike McGowan started his second career as
NOAH’s first executive director in January 2010. Mike served
as a NOAH board member from 1995 to 2009 including being
president from 2001 – 2009.
Mike has albinism and is legally blind. A lifelong resident of
the City of Chicago, Mike has been married for over 25
years. He and wife Sheri have one child, a grown son,
Bobby.
Martin
Professor Frank Martin
- Bachelor of Medicine, Bachelor of Surgery (Sydney)
- Fellow of the Australasian College of Ophthalmologists
- Fellow of the Australasian College of Surgeons Clinical
Professor University of Sydney
- Consultant Ophthalmologist, specialising in paediatric
ophthalmology and Strabismus, Sydney Ophthalmic
Specialists, 139 Macquarie Street, Sydney
- Visiting ophthalmologist at the Sydney Children's
Hospitals Network and Sydney Eye Hospital.
- Chair of Children's Medical Research Institute Board in
Sydney.
- Member of the Board of Trustees of the American
Academy of Ophthalmology and the International Council
of Ophthalmology and the Asia Pacific Academy of
Ophthalmology
46
Oberstein
- Diploma of Optometry
- Diploma of Optometry (FOA South Africa)
- Member of the British College of Optometry
- Senior Staff Optometrist, Low Vision (UNSW Optometry
Clinic)
- PhD Candidate
Sharon qualified as an optometrist in South Africa in 1989
(Cum laude). She has been involved in teaching and
supervising Low Vision to optometry students both in
South Africa and Australia for more than 18 years. Sharon
migrated with her family to Sydney in 2003, joining UNSW
in 2004. She completed a master’s unit course titled
Rehabilitation of the Partially Sighted (2005). In 2011
Sharon registered for a PhD by research on driving and
low vision. Sharon has been invited to present at events
for optometrists, rehabilitation organisations, planning
committees, and is currently a member of the OAA Low
Vision Working Group.
Parker
Dr Shari Parker JP
- Bachelor of Medial Science with honours University of
NSW (1999), Bachelor of Medicine, Bachelor of Surgery
with honours, University of NSW (2000), Fellow of the
Australasian Faculty of Rehabilitation Medicine.
- Staff Specialist Rehabilitation Physician St Vincent’s
Hospital, Sydney; Chair of Rehabilitation Medicine St
Vincent’s Private Hospital, Sydney; Coordinator of
Education, Royal Australasian College of Physicians;
Senior Conjoint Lecturer, University of NSW and
University of Notre Dame.
As a rehabilitation doctor, my focus is all about helping a
person to maximise their function, whatever their injury,
disease, or condition. I have been interested in the factors
contributing to neck pain, eye strain and headache in
albinism as it’s a troublesome issue often discussed in the
albinism community. In future albinism work, I plan to
examine issues around sleep and mood disturbance and
Vitamin D.
Simon and I have three children, Max, Zoe and Ada.
47
Poynting
Michael Poynting
- Bachelor of Theology (Philosophy), Certificate of Orientation
and Mobility
- Principal Instructor, Orientation and Mobility (Guide Dog)
I have been employed in the human services sector for
over thirty years. I initially worked for five years with
people who have cerebral palsy providing “open
employment” placement and support services. I Joined
Guide Dogs in 1990 as Pets As Therapy Co-ordinator. This
role evolved into managing the Guide Dog Training Centre.
I participated as a member of the ministerial White Paper
Advisory Committee for the Companion Animals Act. In
1997 I commenced the Guide Dog training course, with
completion in 2002.Since that time I have worked with
clients throughout the state of New South Wales as well as
clients in the Australian Capital Territory.
Phu
Dr. Jack Phy
- Bachelor of Optometry (Hons.), Bachelor of Science (Vision Science)
- Clinical optometrist
I graduated at the end of 2011 and have been in an ocular disease based practice in
South West Sydney. I specialise in eye disease and contact lenses, and work closely
with local general practitioners and hospitals in the co-management of patients with
systemic disease. I am currently completing a Master of Public Health with a special
interest in glaucoma
Retford
Kara Retford
Development Coordinator NSW / ACT – Australian
Paralympic Committee
48
Silveira
Sue Silveira
- Master of Clinical Sciences (Education), Associate
Diploma Orthoptics
- Research Fellow, Royal Institute for Deaf and Blind
Children; Conjoint Lecturer University of Newcastle
Sue is a qualified orthoptist who currently works as a
research fellow at the Royal Institute for Deaf and Blind
Children, managing the Australian Childhood Vision
Impairment Register. Sue also teaches in the Masters of
Special Education, Vision Impairment and Blindness,
University of Newcastle. Sue is enrolled in a Doctor of
Philosophy, and the topic of investigation is Australian
childhood vision impairment.
Summers
Professor Gail Summers, MD
- Doctor of Medicine
- Professor Departments of Ophthalmology & Visual
Neurosciences and Paediatrics, University of Minnesota
- Director, Paediatric Ophthalmology and Strabismus,
University of Minnesota
Professor Gail Summers is a paediatric ophthalmologist
who is Professor in the Departments of Ophthalmology
and Visual Neuroscience and Paediatrics at the University
of Minnesota in Minneapolis, Minnesota, US. She directs
the International Centre for Albinism and has been
involved in albinism research since 1984. She has been
president of the American Association for Paediatric
Ophthalmology and Strabismus from which she received
the Parks Bronze Medal and the Lifetime Achievement
Award. Professor Summers has also received the Gold
Humanism Award for her compassionate patient care.
49
Whitfield
Dr Margot Whitfield
- Bachelor of Medicine, Bachelor of Surgery, Fellow of the
Australasian College of Dermatologists, Diploma of
Tropical Medicine and Hygiene.
- Consultant, St Vincent’s Hospital, Sydney, Skin and
Cancer Foundation, Darlinghurst, Senior Conjoint
Lecturer, University of NSW
Dr Margot Whitfield is a Sydney dermatologist who was
Head of the Department of Dermatology at St Vincent’s
Hospital for 9 years. She has also been conducting an HIV
skin clinic at the Skin and Cancer Foundation, Darlinghurst
Sydney, for 15 years. She has been working with the Fiji
Ministry of Health for 10 years looking at the problem of
scabies within their community, as is involved in an
NHMRC sponsored trial, currently being conducted there.
More recently she has been trying to help the Fiji Ministry
of Health see if it is possible to obtain national data on
their albinism prevalence.
Wiltshire
Cathie Wiltshire
- Bachelor of Applied Health Science (Orthoptics)
University of Sydney
- Orthoptist/Clinic Manager, Low Vision Clinic, Guide
Dogs NSW/ACT
Currently working in low vision, with previous experience
in paediatrics, private Ophthalmology practice, University
teaching clinics, lecturer and tutor in the School of
Orthoptics, and planning student clinic programs.
Zhou
Mathew Zhou is 10 years old and is a grade 5 student at
West Pymble Public School. He started learning marimba
in March 2013.
50
Social
Happenings
Welcome Reception
For those who have pre-booked, please join us for a drink and a
nibble and an ice breaker in Ballroom 1 at 5:30pm on Friday
night. Entertainment will be provided by a jazz trio of students
from St Andrew’s Cathedral School.
Casual dinner
Following the reception, at 6:30 to 7pm, all are welcome to join
us, heading out to dinner in nearby restaurants. We have
booked the entire upstairs dining area at “Mammas Pizza Pasta
Bar”, a relatively inexpensive family friendly meal on Liverpool
Street. Please ask someone in a blue Committee shirt if you
would like assistance.
Other suggestions:
- Captain Torres – 72 Liverpool St, Sydney (Spanish)
- Pizza Hut Restaurant 630 George St Sydney
- Grill’d – Health Burgers – World Square Shopping Centre 644
George St Sydney
51
Conference Dinner
- On Saturday night, we will meet in the foyer at 6pm to catch
buses down to Pyrmont Bay, the launch site for our Rhythmboat
cruise. We anticipate return by 10-10:30pm.
- Be careful when getting onto the boat as there is a hazardous
step. Staff will be there to assist you.
- The boat is a double decker. The downstairs area is secure for
children, and will be where the music and the food is. We will
keep the windows open for a sea breeze. Stairs lead up to
sliding doors and out onto the open deck. It can get windy up
there, please bring something warmer to wear. Toilets are
downstairs, past the bar.
- Downstairs is a bar. One complimentary beer, wine or soft drink
(for children) is included with your ticket. Drinks prices are
quite expensive, we apologise but this is out of our hands.
- DJ Stanley will entertain you, he is lots of fun! If you have a
specific music request, or want to grab the microphone and
have a sing, you will be encouraged! If the music is too loud,
please tell us, and we will try to amend, or maybe head up onto
the deck for a quieter conversation.
- This will be a non-smoking vessel for our cruise.
- If you are making your own way there, please talk to one of the
committee members who will give you instructions.
- Where are we?? There will be several people on board with
tablet devices. Please ask a committee member if you would
like to see where we are going on the map.
- During the evening, technology permitting, we will have a
Skype hook up with the Albinism Fellowship of UK and Ireland,
who are also having their conference this same weekend. If
you would to have a specific question asked or comment made,
talk to Elizabth Beales, who will be facilitating the conversation.
52
Menu
Buffet selection
Hot & Cold Selection
Chicken Slices in Mild Curry Sauce with Jasmine Rice
Hokkien Stir Fry Noodles & Seasonal Vegetables
Fettuccini Boscaiola
Selection of Cold Meat Cuts, Cheese, Olives, Sun Dried
Tomatoes
Selection of Salads
Green Garden Salad with Italian Dressing
Orange and Beetroot Salad
Bean Salad with Balsamic & Olive oil
Creamy Potato Salad
Tomato & Boccioni drizzled with balsamic vinegar
Fresh Dinner Rolls
Desserts
Rich Chocolate Mud Cake / Banana Cake / Cheese Cake
After Party
Join us for a relaxed celebratory party after the conference
wraps up, and we find out the answer to the big question –
where next……the stunning Lauren Dawes will entertain you,
plus some guest performances by the kids. Don’t miss out. Wind
down, relax, reminisce and plan for your next AFA get together.
53
Vendors and
Stuff to buy
Vendors
A number of vendor tables will be set up in Ballroom 1 during all
of the breaks. Please go by and have a look and trial the
products on offer.
Humanware
Vision Australia – Adaptive Technology
Merchandise
Please come and visit us at the merchandise stall. Our wonderful
Ted Thomas, treasurer extraordinaire and master of the
merchandise will be there most of the time, assisted by a
wonderful crew of helpers – Dan, Glen, Jamie, Jean, Ken, Kim,
Marie, Jamie, Tanya, Trish.
If you want something but we don’t have your size or colour,
please place your request (or suggestion!) in the orders book
and we will get it in for you if possible.
54
I B NO Stress Man - pre-order yours today!
Calico Bag with AFA logo
Bucket hats
Caps
Kids T shirts
Adult T shirts
Raising a child with albinism (book) by National Organisation
for Albinism and Hypopigmentation
$5
$5
$12
$10
$15
$20
$15
Parents of children with albinism now have access to a one-of-a-kind book that
will undoubtedly be a go-to resource for years to come. Unveiled at NOAH’s 12th
National Conference in Las Vegas, Raising a Child with Albinism: A Guide to the
Early Years is a 200-page volume containing contributions from close to 20
different writers. It provides a singularly authoritative source for new parents of
children with albinism. Edited by NOAH member Susan DuBois, mother of two
children with albinism, the reassuring and comforting book is illustrated with
colour photos contributed by Positive Exposure’s Rick Guidotti and eight others.
** Our Australian Supplement for this will soon be released!
But Mommy It’s not Fair! (book) by Sherria LaShon Elliott
$15
"Heaven" is a little girl, born with Albinism. A genetic condition, which is little or
no pigment in her hair, skin, and eyes. In this series, "Heaven" must come to
terms with her condition as she overcomes some cruelty along the way. Her
mission is to help the world embrace the differences we all have in one another.
Find out how she perseveres to become a shining star.
All Children Have Different Eyes (Book) by Edie A. Glaser
and Marie Burgio
$25
This fiction book is written for children who are mainstreamed in school, but
have differing forms of visual impairment The characters confidently model
healthy social skills, and it helps encourage healthy social development for other
children. The book includes activities for parents and teachers at the back. For
ages 4-8
AFA pins
AFA Pens
“Unique” (book) – get your signed copy!
$5
$2
This is a heartwarming story of a little robin born with albinism, who matures and
succeeds in life, by learning to handle, in a positive manner, her "Unique" genetic
condition. She learned to adapt by going over, under, around, and through physical
challenges in her path. From beginning to end, you will be captivated by Unique's
unique.
Price TBC
55
Venue
- Rydges Hotel is located within the World Square precinct,
which includes World Square Shopping centre, World Tower
Commercial (where the crèche is located) and World Tower
Residential
- There are two entrances to the hotel – the main entrance
on Pitt Street (389 Pitt Street, Sydney) and the other on
Liverpool Street, with escalator and lift access.
- The escalator on the Liverpool Street will be closed on
Saturday and to reduce public traffic through our
conference area.
- There are 3 ballrooms, which are inter-connectable.
“Ballroom 1” is where the vendor stalls, including AFA
merchandise stand will be located, along with the morning
and afternoon tea service.
- “Ballrooms 2 and 3” will be opened to form a large room in
which there are several screens to make viewing easy from
any position.
- At the back of ballroom 2/3 will be a space with toys and
cushions for the younger children aged 1 and under to
move around and play. A private area for feeding mothers
will also be provided at the back.
- There is a corridor running off the back of the ballrooms
which contains the toilet facilities, including accessible
56
-
-
-
access toilet. We intent to place a baby change table there
too.
Piano – please ask permission from pianist Martin Beales
before touching the piano.
The AV desk will be to the right of the stage when looking
at the stage, manned by Timothy Boye. He is your “go to”
person regarding loading up speaker talks.
The conference will be professionally videoed. Be mindful of
where the cameras are and be cautious of the cables.
Bright yellow gaffa tape will outline the aisles and any other
hazards.
Emergency procedures will be outlined in the opening
ceremony, or please ask a member of Rydges staff if you
want to clarify anything
Wifi Internet will be available during the sessions. Please
ask for a login.
Map / Floor plan including rooms, toilets, restaurant,
bathrooms etc.
57
-
58
What’s
Nearby?
The hotel is in the same block as World Square Shopping
Centre, which contains, apart from other things:
Pharmacy
Medical Centre
Supermarket News agency
Food and drinks – take away, fast food, café, restaurants
Mamma’s Pizza
Pasta Bar 72
Liverpool St
Crèche drop off
Rydges
conference
venue 389
Pitt St
59
Youth
Program
The bigger kids are going to have a great time in this program which
was put together by Dr. Rachel Perry, “Zara’s Mum”, and will be
coordinated by her talented, enthusiastic, and intelligent student, Kate
La Peyre. There are even a few adults who are just a little bit envious
of all the activities they are getting up to! They will do some great
active times, and more quiet activities which will all help explore what
it is to have albinism, or to be close to someone with albinism.
Please note that the crèche runs during the Saturday and
Sunday of the conference only. For those bringing children to
the Friday session, we will be providing a television and child
friendly video during the Albinism 101 Workshop. It is likely that
there will be an adult supervising this, but you will maintain
responsibility for your children during this session
Sign in
- Sign in / drop off will be from 8:30am in the meeting room
adjacent to Ballroom 1. There will be a sign in sheet there. This
will enable you to get off to the first session which will start at
9am sharp.
60
- At sign in, you will need to indicate your consent for your child to
go on the two excursions
Saturday – excursion to monkey Baa Theatre for drama
workshop. This will involve walking approximately 500m
down Liverpool Street to the theatre with a 1 to 3 ratio
Sunday – Excursion to University of NSW for Judo and
Goalball experience, travelling by private coach and
participating in an introductory session to these two sports
with trained professionals
- Please sign your children out by 5:30pm at the latest.
- We will have copies of the paperwork you previously completed.
What they will be doing
The Youth Program will have one external excursion each day.
- Saturday – Monkey Baa, Darling Quarter Theatre (Darling
Harbour) for a Drama workshop (this will form the basis for their
Closing Ceremony performance)
- Sunday – the kids will head to the University of NSW for a Judo
and Goalball session with the UNSW Judo Club and Australian
Paralympic Committee.
- These are some of the other activities which we will squeeze in
around the excursions. These will vary according to the child’s age
and interests
Interactive book reading session with the Authors of “Unique”, a book
about a robing with albinism
Orientation and Mobility activities with Guide Dogs NSW,
Sessions on positive self-esteem and bullying
A chat about making the most of your VI support teachers (where
relevant)
61
- Running alongside these sessions will be space for the kids to
explore what 'living with albinism' means to them: be it as a kid
with albinism, sibling or child of a person with albinism – in
various forms – writing, wire art, drawing, playdough, music,
writing the script for a radio advertisement about albinism. What
they create will be exhibited for the closing ceremony and After
Party
- Kids will also perform at the closing ceremony.
What to bring:
- Backpack
- Hat
- Sunglasses
- Water Bottle
- Cane (if applicable)
- Cardigan/Jumper (weather dependent)
- Raincoat (weather dependent)
- Sunscreen (we will have some as backup)
- Your youth program T-shirt on Sunday
What we provide
A bright AFA Conference shirt for you to keep!
Please wear it again on Sunday
We provide morning tea, lunch and afternoon tea, all the activities,
wonderful care with high adult to child rations, and lots of fun
guaranteed!
62
Staffing
Rachel and Kate have a fine team of about 20 helpers and
professionals, including Tim and Eva from Monkey Baa, Warren from
judo, and the Paralympic Committee helping with goalball
Dr Rachel Perry
- Doctor of Philosophy (University of
Technology, Sydney), Bachelor of Education
(Primary - Honours) (University of Technology,
Sydney)
- Lecturer (Education) & Project Manager (ACCY
– University of Technology, Sydney)
Rachel has been involved with the AFA since her
daughter’s birth (Zara – OCA) in early 2006. Rachel
has a background in education having worked as a
primary school teacher, in special education and at
tertiary level. She is also a recently qualified Braille
Educator. This knowledge, along with her families
experience has informed her journey and knowledge
about transitions into and during school years for
children with vision impairment. Rachel is excited
about the opportunity to share her experiences at
this conference for the pre-school to school
transition phase.
Kate La Peyre
Kate has an extensive creative arts
background and has spent many years
teaching singing, dance and drama. With
qualifications in events management, Kate
was part of the fundraising team for a notfor-project organisation, working on national
campaigns and with fundraisers in the
community. Kate has worked with children as
a nanny for many years and is now in her
final year of a primary education degree at
the University of Technology, Sydney
(UTS).
63
Special Thanks
Special Thanks
A conference takes at least two years of planning and hard
work. There are dozens of people who have put in tireless work
to bring you this conference and it is not possible to thank each
and every person. But you will know if you have helped us, even
if it is by a grateful word. The most important people to thank
are you, the attendees. Without you, we wouldn’t have a
conference!
Conference Committee and Executive Committee
Role
Name
President
Elizabeth Beales
Treasurer, Merchandise, Vendor
Ted Thomas
liaison
Vice President, Social events
Kim Gillespie
Conference Coordinator,
Shari Parker
Secretary, Program designer,
International Relations
Youth Program, Crèche
Rachel Perry
Audio-visual, Speaker Liaison
Tim Boye
Media Liaison
Bryony Balaton-Chrimes
Competitions Coordinator
Tanya Boye
Fundraising coordinator
Patricia Woodcroft- Lee
AFA general committee
AFA General Committee - Tim Bellamy, Madeleine Ellis.
Allen Little
64
Additional thanks to go:
- A very special vote of appreciation goes to our families, the families
of the conference subcommittee, who have been so patient and
understanding with us as we worked towards putting on this
conference.
- Linda Blaik – organised the Geelong Fundraiser, which
raised money to pay for professional videoing of the
conference
- A very generous individual donation which allowed us to use
a private bus to transport children to the University of NSW
for the judo and goalball workshop
- Donors of gifts to the Raffle
“Aunt Agi”
Melanie Boulton
Bryony Balaton-Chrimes
Marie Bedford
Tanya Boye
Rose Pierse
Margaret Ryan
Patricia Woodcroft Lee
- Donors of special handmade items for the silent auction:
Jennifer Adam, “Aunt Agi”, Cathie Perry, Lyn Thomas
- Rydges Hotel, World Square, especially Litisha and more
recently Tanya Abrahams
And to our media sponsors and contacts
- ABC Radio National Amanda Smith “The Body Sphere”
- ABC Radio National “Life Matters”
- RPH network
- To Ginger – for inspiring and humbling the conference
committee
Sponsors
65
Sponsors
The AFA wishes to acknowledge and thanks our very generous
sponsors. The success of this conference would not have been
possible without the support, loyalty and dedication of our
sponsors.
If you or your organisation would like to sponsor AFA’s ongoing
non-profit as a not for profit charity run wholly by volunteers to
continue our work of Acceptance, Friendship and Advocacy
around albinism, please visit our website to download a donation
form.
Major Sponsors
For donating the child care centre and
staffing for the crèche program
(02) 9262 7927
0437 960 790
[email protected]
Level 14, 87-89 Liverpool Street
Sydney 2000
www.sydneychildcare.com
For running the drama workshop for the
Youth program
Monkey Baa Theatre Company
Lend Lease Darling Quarter Theatre
www.monkeybaa.com.au
Mobile 0417 656 145
Ph 02 8624 9341 Ext 9
66
Judo Workshop for Youth Program
University of NSW Judo Club, Warren Rosser
Judo classes from 3 years and up
http://www.unswjudo.net.au/news.php
For donating a whole bunch of goodies
for use by the Youth program and at
the conference
http://www.partytimeonline.com.au/
For offering the chance to apply for
National Disability Conference Initiative
which has assisted 33 people to attend
the conference
Other Generous sponsors
Providing photographer Josie Eldred for the weekend
http://www.lovetobeyoungphotography.com/
For assisting the AFA with all its merchandise needs and
donations for lucky door prizes and raffle
http://www.gopromotions.com.au/
67
For donating shirts for youth program participants and for
giving Rachel the time to coordinate the Youth program
Mortgage Choice Northern Beaches Andrew Perry
http://www.mortgagechoice.com.au/andrew.perry
For donating a box of Speccles to the AFA
www.speccles.com
Email: [email protected]
Phone: +61 3 9481 4297
Mobile: +61 4 25 710160
For providing musicians for entertainment at the Welcome
Reception and for finding a student to assist with
Acknowledgement of Country in the Opening Ceremony
http://www.sacs.nsw.edu.au/
Unique Print Pty Ltd
154 Broadway Road Chippendale, NSW 2008
(Broadway Gym Building)
Telephone: 02 9281 3799
Fax: 02 9211 4255
Email: [email protected]
Web: www.uniqueprint.com.au
For donating tubes of sunscreen for the AFA conference
goody bags
Neil Henney, National Licenscing Manager, Cancer Council
Australia
www.cancer.org.au
For donating prizes for the Valvoline Pre conference Raffle
www.valvoline.com
Kindermusik CDs for raffle
Nicole Tobin-Donnelly http://kmusikcairns.com/profile.html
68
Donation of books, and time to do book readings with the
crèche and youth programs
“Unique” By Arlene Gerrity and Margaret Mary Campbell
To purchase online, go to
http://www.scribd.com/doc/163259504/UNIQUE
For donating “Moo Goo” skincare products for the
conference bags
www.moogoo.com.au
For donating a copy of the book “Mother Love” to the
Raffle
Dr Melanie Strang
NSW Square Dance
Callers Association
For donating money raised by raffle to youth program
http://www.easy.com.au/callers/index.html
69
This page intentionally been left blank so you can make notes,
collect signatures, or get details of people with whom you would
like to keep in contact.
70
This page intentionally been left blank so you can make notes,
collect signatures, or get details of people with whom you would
like to keep in contact.
71
This page intentionally been left blank so you can make notes,
collect signatures, or get details of people with whom you would
like to keep in contact.
72