2013 Conference

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WOW! What a weekend! I hope that you have had a chance to catch your breath, catch up on sleep, travel home, and just begin to process all of the information, wisdom and experiences shared, friendships and connections made.

Words used by our committee to describe the weekend include:
Awesome Full Worthwhile Wow Amazeballs Insane Fun Exciting Stressful Rewarding Exhausting Friendly Inclusive Professional Fun Fun Fun!!!!
…….I think we can all relate to this huge diversity of emotions and feelings.

Some very important messages:

…..and da winner is……NEW ZEALAND!!!!! \

For those who had to leave early and didn’t hear the AFA is collaborating with the Albinism Trust New Zealand to bring you the 2015 conference. Negotiations are underway to finalise details. As soon as details are finalised, we will let you know. We will be working tirelessly to bring you a reasonably priced package deal, possibly involving airline sponsorship…….watch this space and start saving your pennies!!

Feedback …..URGENT

Please complete this online survey about the conference so that we can make our future conferences cater to your needs. Click on this links below to complete in various formats. It will only take about 5 minutes and your feedback will be invaluable for future conference planning. Plus you get to relive all the things that the conference had to offer.

To remind yourself of the program, please refer to the conference program here:http://jollyninja.com/afa/Final%20Program%20AFA%20Conference%202013.pdf

Your responses will be anonymous. So please put in all your positive comments as well as your constructive suggestions.

Download in PDF format and complete by hand and return as per sheet http://albinismaustralia.org/wp-content/uploads/2013/10/AFA-Conference-2013-Feedback-form-and-health-professionals-form-PDF.pdf

Or word format

*****But by far the easiest – click here to complete online Feedback Questionnaire (kindly converted to this format by Dr Rachel Perry)


In her presentation, Pru Jobling referred to a resource document listing very useful and practical internet resources This can be accessed by clicking on this link:https://dl.dropboxusercontent.com/u/8023034/Visiting%20Support%20Teachers%20Resources%20for%20school%20and%20further%20education.docx

Your opportunity to ask questions of the presenters

As the program was so jam packed, some of the question times were cut short by necessity.
Did you have a question for one of our speakers but not get the chance to ask it?
Please email it to conference@albinismaustralia and I will forward it on to the relevant presenter

Friendship list

Ling the mum of one of our incred6ibly talented performers, Mathew Zhou, suggested we prepare a “friendship list” to facilitate ongoing connection and friendships. If you are happy for your email and name to be shared with the others who were at the conference, please email conference@albinismaustralia and I will prepare a list.

Share what you learnt

Knowledge shared is knowledge doubled.
Please take the time to write of your experiences at the conference, or maybe just three things you learnt either on our Facebook page, or send your articles to newsletter@albinismaustralia.org

Grant recipients

If you have not already done so, please forward copies of the expenses up to the maximum of your allocated subsidy through to conference@albinismastralia.org

We will process them and issue refunds ASAP.

Also, please write your conference article which is needed as part of the grant


Josie did an incredible job photographing all things at the conference. She literally took thousands of photos and is in the process of going through and compiling the “cream of the crop”. These will be shared in low res thumbnail version with a water mark in the coming weeks and will be available at a small fee (we are trying to build up our coffers to keep prices at the New Zealand conference as low as possible). Watch this space!!

Josie couldn’t be everywhere at once though! If you have some wonderful, candid happy snaps, you would like to share with the AFA community, please email through to newsletter@albinismaustralia.org so they can go into our next newsletter.

Here are the conference stats:

- 260 people involved
- 76 people with albinism
- 27 kids in the youth program
- 24 kids in the crèche
- 30 dedicated volunteers
- 50 presenters
- 40 professionals
- at least 1000 teardrops, 5000 smiles, 7000 episodes of laughter, and 10,000 moments of shared understanding.-
……Not to mention, conservatively 1600 combined years of experience related to albinism all in one room.

Thankyou from the conference coordinator

As you get back to your new normality, I would like to take a brief moment to make some very personal and special notes of appreciation to some very special people with whom last weekend would not be possible.

The biggest goes to the conference committee. Over 2000 emails were sent between the committee to make this conference happen. Planning started two years ago with Ted, Kim and Shari visiting over a dozen venues, taking into account the room, the lighting, the facilities, the staff, the price, the food etc before finally settling on Rydges. From there, we met monthly, then fortnightly, weekly, daily, culminating in the conference.

• Conference planning is an epic and very complicated beast. All manner of things were addressed, ranging from:
• Venue liaison, Negotiating an unexpected major venue overhaul (which actually resulted in improvements!), Our main venue contact left midway through planning process but was very ably taken over by Tanya Abrahams, AV requirements, Piano, Block booking for accommodation
• Deciding on topics to cover, Invite and liaise with speakers and all their requirements, including 7 international speakers and 50 presenters in total, prepare a program which would meet all the speakers preferred times, along with MCs for 11 sessions. Source speaker gifts and acknowledgements
• Source venues and entertainment for social activities, negotiate on inclusions for the before and after party, as well as ghost tour and bridge climb
• Source venue, staffing, program for youth program and crèche program which needed to cater to special needs of a diverse group of kids ranging from 10 months to 16 years to keep them entertained for over 16 hours, including legal requirements, excursions, food, transport
• Prepare a 72 program, feedback sheets, information sheets, AGM materials
• Source donors and sponsors for 4 competition fundraising including volunteers to sell and man the stalls. Source merchandise and prepare systems
• Source and negotiate with vendors
• Apply for FACHSIA grant, prepare application form, administer adjudication and administration
• Process all registrations, reply to questions by phone, email from individuals and institutions, send invoices and keep the conference to budget
• Keep the whole shebang running smoothly over a jam packed weekend with big happy face!!

Phew, it’s no wonder we are all a little bit fatigued!

I would like to thank each and every person involved in the program:

To the committee and other key lynchpins
• Bry – thankyou for your bubbly enthusiasm, for your wonderful MC-ing, for keeping those journos in check and for masterfully liaising with DJ Stanley on the cruise all during circumstances which weren’t always the easiest,
• Elizabeth – La Presidenta, what more needs to be said. Thankyou for your wisdom and your friendship and steadying the ship at all times.
• Kim – the social queen – thanks for liaising with all things social at the conference, for arranging our fun trial run on the cruise and for all you have done throughout five consecutive conferences.Thanks for your work throughout the weekend and for your MC-ing
• Madeleine – our new Vice President who proved herself even before taking on the role by seeing what needed to done regarding a rapid turnaround grant and made it happen BAM! like that Maddy, “welcome” and we value you as a valued member of “our tribe”
• Martin – thankyou for your Maestro performances on piano, for MC-ing the final session and preparing that fabulous entree into our next conference, for being Liz’s rock
• Mike, the Magnificent – thankyou for being the webinar guru and for spending so much time on your vacation helping us. Your wisdom and cheeky grin are something I will always remember from this conference.
• Rachel – the token pigmento in our core conference committee – the stalwart of the youth and crèche programs – your energy and precision to detail are without fault and highly respected amongst all. Thankyou for your friendship and your strength and your dedication,
• Simon, Max, Zoe and Ada – this conference could not have happened without your patience, your tolerance, your love and care. Mummy’s back now
• Tanya – Captain of the competitions – thankyou for your tireless energy and commitment to this and for all the other preparations you did in the lead up to and especially during the conference. Your talk was a real hit.
• Ted – Treasurer extraordinaire and driver of the Skype bus and maybe future direction in maritime management (!!) – Ted’s reliable wisdom and wit, his calm proficiency as our money man could not be done without. Lyn, he is a keeper Thanks too for your MCing skills and for your bootscooting!
• Tim Bellamy – for your wisdom on the committee and for the change table of course!!
• Tim B. Boye – the master of the AV. We were so impressed with your professionalism and your dedication and your skill. Great things will come of you. Thanks for all the things you just leaped in and sorted during the final weeks and also for your inspired presentation in the careers panel.
• Trish – thankyou for completing the National Disability Conferece Initiative grant application which gave us $12 000 to assist dozens of people with albinism and their family to attend the conference. We value your for your skills, your experience and as a dear friend.

To the Volunteers – for all the volunteers in the crèche and the youth program, for those who manned the stalls and who offered incidental assistance on the day, we thankyou.
To all the speakers who came from near and far, thankyou for giving up your free time to present without payment, for preparing some wonderful slides and for caring about the albinism community
And especially to everyone who came and participated in the conference program and we hope gained much that you can return to your community and your usual life with to make your life better and that of people with albinism.

And to anyone else I have forgotten, you know who you are, so go give yourself a huge pat on the back and maybe a chocolate biscuit or two.

Until New Zealand !
Signing off

Shari Parker
Conference Coordinator

You Are Invited To

The Albinism Fellowship of Australia

Biennial Conference

11th to 13th October 2013

Rydges World Square

389 Pitt Street, Sydney NSW 2000, Australia

The final Program is here.

The Conference Evaluation Form is available in Word and PDF formats.



Download the Registration Form (Word Format, PDF)

Return the registration form in of the following ways:

  1. Email to: conference@albinismaustralia.org
  2. Post to: PO BOX 20729, World Square, 2002, Australia
  3. Fax to: 02 9571 5465

Join our Facebook page “Fair GO! 2013″

Please join our Facebook page to keep current with conference updates! “Fair GO! 2013“.

COST from $120 per person. Please see form for details.

What’s Included

  • 2½ day conference educational program
  • Morning and afternoon tea, lunch on Saturday and Sunday
  • After party
  • Creche program for children ages 1-6
  • Youth program for older children aged 7 and over

Social Program (optional extra)

  • Ghost tour of the Rocks with others from the conference – Thursday evening 10 October 2013 – for more info click here
  • Harbour Bridge Climb with others from the conference – Friday morning 9 October 2013 - for more info click here
  • Welcome Reception, Friday evening 11 October 2013
  • Informal Casual dinner in local restaurants, Friday 11 October 2013
  • Conference dinner, Sydney Harbour Cruise, Saturday evening 12 October 2013

Who Should Attend

  • Adults with Albinism
  • Children with Albinism
  • Parents, carers, family, friends of people with Albinism
  • Professionals – health, O&M, education. We are also offering a workshop aimed at professionals on the morning of 11th October 2013. Click here for additional information.
  • Anyone else interested in learning more about Albinism

Remote Attendance

For those unable to attend the conference due to geography, finances or other practicalities, we are offering remote attendance via the internet. Conference attendance in person is always encouraged where possible. Please note:

  • This service is being trialed at the conference for the first time.
  • You need to have a reliable fast speed internet connection
  • Login / access codes will be provided prior to the conference


Phone Rydges World Square on 02 8268 1888 and mention the Albinism Fellowship of Australia Conference when booking. While the period for a guaranteed discounted rate has now passed, they may still be able to assist you with a good price, depending upon availability.

There are countless other accommodation options ranging from backpackers to five star hotels within close proximity to the venue. Options are listed on the registration form.

There are countless other accommodation options ranging from backpackers to five star hotels within close proximity to the venue. Options are listed on the registration form.

Albinism Health Professionals Workshop

The AFA is hosting a workshop aimed at health professionals who may assist in managing people with albinism, prior to the conference on Friday morning 11th October 2013. Share this information (PDF, Word) with any health professionals who would be interested in attending.

Financial Support

The AFA is administering a grant from the federal government to assist people with albinism to attend the conference. Applications have now closed. Successful applicants will be notified by 5 September 2013.

Please direct any queries to Shari Parker Secretary 0411622122 secretary@albinismaustralia.org

Program Overview

Thursday evening Ghost tour in the Rocks (optional)
Friday morning Harbour Bridge Climb (optional)
Friday afternoon Albinism 101 workshop
Friday evening Welcome reception (optional) Informal dinner, local restaurants
Saturday 9am-5pm Conference program, Crèche and youth programs
Saturday evening Conference dinner (optional) Harbour Cruise
Sunday 8am AFA Annual General Meeting
9am to 5pm Conference program
Crèche and Youth programs
Sunday evening After party at conference venue

Conference schedule

click here to see the current program

Sydney – Highlights

The conference hotel is situated in the heart of Sydney’s CBD, a five minute walk from Town Hall Station and from Museum Station. Within walking distance, you have all the attractions of Darling Harbour including IMAX theatre, Sydney Aquarium, Wildlife World, along with Powerhouse museum, Australia Museum and Hyde Park.

Just a short trip by train or bus will take you to the Opera House and Sydney Harbour Bridge Centennial Park, the Art Gallery of NSW, The Rocks, the Museum of Contemporary Art and to Circular Quay. From Manly, you can a ferry to Manly, Sydney Zoo or for the young at heart, Luna Park! You can get a short bus to visit our famous beaches Manly and Coogee which are just lovely in the evenings once the sun has gone down. Further afield, a 2 hour train trip will take you to the beautiful Blue Mountains, 3 sisters, Scenic Railway, and bushwalks for everyone.

The weather during October averages 22oC (72 oF), with average monthly rail fall of 73mm.

Please see www.sydney.com.au or www.cityofsydney.gov.au for more information.

Any questions, or to volunteer with the conference, please call conference coordinator Shari Parker
0411 622 122 or 1300 22 16 19

We look forward to seeing you in Sydney!

Conference Sponsors

We would like to thank our generous sponsors and supporters who enable the AFA to successfully offer our conference experience.