News and Updates

19 July 2022

Job Opportunity – Executive Manager

We currently have a new and exciting opportunity available for a passionate Executive Manager to join Retina Australia and lead us to achieve our strategic objectives.

Reporting directly to the Retina Australia Board, in this inaugural role you will lead and motivate a team of staff and volunteers throughout Australia to build positive and enduring national, international and industry partnerships to achieve Retina Australia’s goals. 

Our goals include developing and growing our donor database, increasing national awareness of Retina Australia, and our research grant program for inherited retinal disease.

This is a part-time role with just 4 days per week but has the potential for full-time hours in the future as the role expands and progresses.

If you’re interested or know someone that is, full details are available at: https://www.seek.com.au/job/57756067

13 June 2022

Queen’s Birthday Honours for Leighton and Rosemary Boyd

We are delighted to announce that our Chairman Leighton Boyd, and Company Secretary Rosemary Boyd have both been recognised in the 2022 Queens Birthday Honours List. 
 
Leighton has been appointed a Member (AM) of the Order of Australia (General Division) in recognition of his “significant service to people who are blind or have low vision”, and Rosemary has been appointed the Medal of the Order of Australia (OAM) (General Division) in recognition of her “service to people who are blind or have low vision”.

Leighton has been involved in Retina Australia and its predecessor organisations, Retina Australia (Victoria) and The Retinitis Pigmentosa Society of Victoria, since joining the committee in 1982.  He served as the Victorian President since 2008, and as Chairman of the national organisation Retina Australia since 2015. Leighton was also a Vice President of Retina International from 2015 – 2021 and a member of the organising committee for four World Congresses.
 
Leighton has also contributed across the sector through his participation as a board member of the former Royal Victorian Institute for the Blind; a volunteer and committee member with Blind Citizens Australia from 2000 – 2015; a committee member focussing on the needs of the blind and low vision communities with Vision 2020 Australia since 2011, and by being a supporter of Bionic Vision since 2010.
 
In his local community in Nillumbik, Leighton has served as a member of the Disability Advisory Group from 2001 – 2009, the Community Inclusion Advisory Committee 2010 -2014 and was recognised as Nillumbik’s Volunteer of the Year in 2009.
 
“It is a great honour to receive this award. I would like to thank everyone who has supported me in my endeavour to make a difference to the lives of Australians who are affected by an inherited retinal disease.”  Leighton Boyd, June 2022. 
 
Rosemary has been involved in Retina Australia and its predecessor organisations, Retina Australia (Victoria) and The Retinitis Pigmentosa Society of Victoria since joining the committee in 1986.  She served as the Victorian Honorary Secretary from 2008 – 2019 and has been a Board member of Retina Australia since 2008, and Company Secretary since 2013.  Rosemary has served as a delegate to Retina International for over 10 years and was the organiser of the Australian Retinitis Pigmentosa Conferences in 2002 and 2015.
 
Rosemary has also worked as Executive Officer for Blind Citizens Australia from 2013 – 2015, and was Chairman of Ross House Association, the current home of Retina Australia, from 2009 – 2013.
 
“I am extremely proud to receive this award. It has been a privilege to work with, and for, the inherited retinal disease community throughout Australia.”  Rosemary Boyd, June 2022.
 
We would like to congratulate both Leighton and Rosemary for this well-earned recognition and thank them for their huge contribution to Retina Australia and the blind and low vision community.

24 February 2022

Do it in the Dark™ 2022 Fundraiser Launch

Do it in the Dark™ is back this March & April. Now in its second year, Do it in the Dark provides Retina Australia with a unique opportunity to engage new audiences, and share our cause with those who may be unfamiliar with inherited retinal diseases.

The concept of Do it in the Dark is simple – gather your family, friends, or co-workers and do an everyday activity like you normally would, while wearing our custom-made glasses which simulate tunnel vision. Tunnel vision is a common symptom that people living with an inherited retinal disease often have, and by wearing these glasses you will be able to better understand the daily lives of people who have debilitating vision issues.

You could have a meal together, watch movies, organise a morning tea, go for a walk (with a sighted guide) or even play some video games. Take some photos with your group while wearing the glasses ( make sure to upload your favourites to social media and tag Retina Australia), discuss the impact of inherited retinal diseases, and raise vital funds which will go towards medical research programs. 

A one-hour event is all it takes to show your support, and a free fundraising kit will be mailed out when you sign up. There is currently no cure for those living with an inherited retinal disease, but we get closer every day because of the generous support of our donors.

View the clickable links below to learn more about this exciting fundraising event: 

Registration Form

FAQ

Just Giving Fundraising Platform

Promotional Poster 

Linktree Social Channels 

2022 Research Grants 

Thru My Eyes App

If you have any other questions about Do it in the Dark, you can phone 1800 999 870 or (03) 9650 5088. You can also email info@retinaaustralia.com.au anytime. 

9 November 2021

Retina Australia 2022 Research Grant Recipients Announced

We are pleased to announce that the 2022 recipients of the Retina Australia medical research grants are Associate Professor Penny Allen (Centre for Eye Research Australia, Melbourne), Dr Rabab Rashwan (Lions Eye Institute, Perth), and Associate Professor Guei-Sheung (Rick) Liu (Centre for Eye Research Australia, Melbourne).  These grants have a combined total value of $120,000.  

Details of the projects are available in Word version here or PDF version here.

Congratulations to the successful researchers and their teams.  We look forward to hearing about your progress over the next 12 to 18 months.  Thanks to all our supporters across Australia – your generous donations allow us to fund these important programs.

25 September 2021

World Retina Day 2021

World Retina Day is taking place on September 25th, 2021. This year, Retina International is highlighting the impact of the COVID-19 Pandemic on the inclusion and wellbeing of its global patient community, and focusing on how the community can “Build Back Better.”

View the full press release via Word here and via PDF here. 

14 September 2021

Annual General Meeting 2021

Notice is hereby given that the 37th Annual General Meeting of Retina Australia will be held on Saturday 9th October via Zoom at 1.30pm AEDT.  You can register your attendance here.

The full notice of meeting and agenda can be downloaded below in your chosen format:

pdf

Word

Plain text

2 September 2021

Free webinar series

The next webinar in our free series will take place on Saturday 9th October at 2pm (AEST).  The topic is

Clinical genetics services helping with genetic information, counselling and access to clinical therapy, trials and research in the IRDs

For further information and to register, click here.

1 September 2021

Retina Australia Quarterly

The September edition of our quarterly newsletter is now available to download in your chosen format.  Click here to access it.

11 June 2021

Our inaugural Giving Day

We are excited to announce our Inaugural Giving Day which will launch on Monday, 21 June 2021 at 10:00 am AEST.

This Giving Day, help us empower over 15,000 Australians living with an inherited retinal disease by supporting our medical research projects, which will change lives!

For 24 hours only, your gift will be DOUBLED thanks to our generous matchers. Please view www.charidy.com/retinaaustralia.

Get involved this Giving Day and help us create a brighter future for every single person living with inherited retinal disease. Spread  the word amongst your family & friends and please like and share our Giving Day posts on Facebook. 

12 March 2021

Do it in the Dark™ 2021 Fundraiser Launch

We are excited to announce the launch of our brand-new fundraising event taking place between March & April 2021, Do it in the Dark™.

The concept of Do it in the Dark is simple – gather your family, friends, or co-workers and do an everyday activity like you normally would, while wearing our custom-made glasses which simulate tunnel vision. Tunnel vision is a common symptom that people living with an inherited retinal disease often have, and by wearing these glasses you will be able to better understand the daily lives of people who have debilitating vision issues.

You could have a meal together, watch movies, organise a morning tea, go for a walk (with a sighted guide) or even play some video games. Take some photos (and upload your favourites to social media) with your group while wearing the glasses, discuss the impact of inherited retinal diseases and raise vital funds which will go towards medical research programs. A one-hour event is all it takes to show your support, and a free fundraising kit will be mailed out when you sign up. There is currently no cure for those living with an inherited retinal disease, but we get closer every day because of the generous support of our donors.

View the clickable links below to learn more about this exciting event:  

Registrant Form

Frequently Asked Questions

Event Poster

Social Media Links

2021 Research Programs  

If you have any other questions about Do it in the Dark, you can phone (03) 9650 5088 or email info@retinaaustralia.com.au. 

19 November 2020

Retina Australia 2021 Grant Recipients Announced

We are pleased to announce that the 2021 recipients of the Retina Australia medical research grants are Dr Lauren Ayton (The University of Melbourne), Professor Alex Hewitt (The University of Tasmania), Dr Fred Chen (The University of Western Australia), Associate Professor Heather Mack (CERA/The University of Melbourne), and Dr Jennifer Thompson (Sir Charles Gairdner Hospital). These grants have a combined total value of $160,000.

You can view a detailed breakdown of the research grants in Word version here or in PDF version here. 

Congratulations to the researchers and their teams, we look forward to hearing about how things progress over the next twelve to eighteen months. Thank you to all of our supporters across the country, for without your generous donations, we would not be able to help fund these important programs.

1 October 2020

Webinar Event: Gene therapy, clinical trials and new developments in IRD research

The regulatory approval and commercialisation of Luxturna in 2017 has opened the floodgates for gene therapy, with numerous clinical trials underway or rapidly approaching. Dr Tom Edwards and Dr Lauren Ayton will update Retina Australia members on the national approach to identifying and characterising people who might be eligible for these trials (through the Inherited Retinal Disease Natural History Study), as well as describing the most promising developments in the field.

This webinar will take place on Saturday 17th October at 2:00pm EST. You can find a copy of the flyer in Word version here or in PDF version here

25 September 2020

Retina International announces the launch of Know Your Code – a genetic testing advocacy portal to mark WORLD RETINA DAY, September 26th, 2020.

Retina Australia Chairman, Leighton Boyd, provides his thoughts on the need for accessible and affordable genetic testing. You can view the official Retina International press release via Word option here and via PDF option here. 

17 September 2020

I Spy, With My Bionic Eye – Herald Sun article featuring Retina Australia Chairman, Leighton Boyd

Retina Australia Chairman, Leighton Boyd, was recently featured in the Herald Sun article ‘I spy, with my bionic eye’. The article discusses a revolutionary device – an implant and camera headset – produced by Monash Vision Group that could help people who are blind to see again. Credit to Herald Sun, journalist Alanah Frost & photographer David Caird. View the Word option here and the PDF option here.

11 August 2020

Our Constitution 

For any new or current members that wish to learn about how we operate, you can download a copy of our constitution here. 

18 June 2020

Webinar Series 2020 – 2021 

We are excited to bring you a series of informative online webinars over the next year.  Members will have access to all events and non-members will be able to pay a casual fee for individual webinars. If you want to learn more about how you can access these webinars, you can send an email to info@retinaaustralia.com.au or phone (03) 9650 5088. 

Our first webinar will take place on Thursday 13th August at 1:00pm EST and will discuss genetic analysis and how this can help patient management and the development of therapies for inherited retinal diseases.

You can find a copy of the flyer in Word version here and in PDF version here. 

26 May 2020

2019 Annual Report and Chairman’s Report available for download

We are currently updating our website to include annual reports and other important documentation. For now, you can find a copy of the 2019 Annual Report here. You can also find the Annual Chairman’s Report here. 

12 November 2019

Retina Australia announces new grant recipients for 2020

We are pleased to announce that we have awarded our medical research grants to four recipients for the year ahead.

We are pleased to announce that we have awarded our medical research grants to four recipients for the year ahead. The 2020 recipients are Dr Raymond Wong (Centre for Eye Research Australia, Dr Anai Gonzalez Cordero (Children’s Medical Research Institute), Professor Andrea Vincent (Sir Charles Gairdner Hospital) and Dr Jennifer Thompson (Australian Retinal Disease Register and DNA Bank).

Sensing the Light: Using Cell Reprogramming to Regenerate Photoreceptors
Dr Raymond Wong
Dr Wong’s Project aims to understand the disease mechanism in photoreceptor degeneration, and to develop cell reprogramming technology to regenerate photoreceptors and restore vision in retinitis pigmentosa.

His team possesses a unique combination of expertise in cell reprogramming, CRISPR technology, single-cell transcriptomics and preclinical retinal research (gene delivery to retina, electrophysiology, retinal imaging, and visual assessment in animal models). This places them in an exceptional position to undertake this Project, reveal the potential for using cell reprogramming to restore vision and shift the field into a new and exciting direction.

Single Cell RNA Sequencing to Characterise Cell Diversity and Molecular Signatures of hiPSC-derived Retinal Organoids
Dr Anai Gonzalez Cordero
The aim of Dr Gonzalez Cordero’s project is to enhance the understanding of inherited eye diseases by combining two important technologies, stem cells and single cell RNA sequencing. Dr Gonzalez Cordero and their team will use stem cells generated from patient’s blood to generate mini human retinas called organoids.

They will characterise cells isolated from organoids from two distinct forms of diseases, named Usher2a and Stargardts and compare these to normal organoids and the adult human retina.

The experiments undertaken Gonzalez Cordero’s project will be used to identify the cell populations within the organ cultures to establish if they are indeed good models in which to study disease. They will also gain insights into the causes of cell damage in disease.

The study is the first step before these organoids can be used in larger projects, aimed to enhance our understanding of eye degenerations and develop new treatment strategies.

Complex Phenotyping in X-Linked Retinal Degeneration due to RPGR Mutations
Professor Andrea Vincent
Dr Vincent’s project is based upon the hypothesis that cilia present in cultured nasal cells will show disruption in structure, and aberrant protein expression in RPGR-Rod Cone Retinal Dystrophy (RCD) individuals with lung disease, compared with normal; and that others with RPGR-RCD, and obligate female carriers will show less severe functional and structural changes.

The project is being undertaken with the idea that better understanding the systemic disease associations present in RPGR-associated inherited retinal disease, can optimise health outcomes for those already affected with a significant visual disability, as identification of mild or pre-clinical lung and ear disease will allow early intervention and treatment.

Provision of Genetic Research Reports to Australian Inherited Retinal Disease Registry Participants via their Nominated Ophthalmologist or Clinical Geneticist
Dr Jennifer Thompson
Our grant will allow Dr Thompson and her team to provide genetic research reports for 200 families via nominated clinicians. In addition to providing support for their participants, the data will be published with other established data, increasing knowledge of the causes of IRD in Australia.


We would like to congratulate the successful applicants and to thank all the researchers who took the time to make applications. We wish them all the best of luck in their research.

1 October 2019

Friends of Retina Australia Perth social gathering and AIRDR presentation

We held our social gathering and presentation on Saturday, 21 September 2019. The event was organised and hosted by our friend Lyn so we must give her a warm thank you!

We're excited to say that we had a total of 41 people attend the event which was a fantastic result.

The team at the Australian Inherited Retinal Disease Register and DNA Bank (AIRDR) gave very enthusiastic insight into what they do and some current research being undertaken.

Lyn caught up with most of those who attended and everyone said how much they enjoyed the presentation by the AIRDR Team.

We would like to say a huge thanks to the AIRDR Team and all those who attended.
For those of you who couldn't make it, Lyn has recorded the presentation and we've uploaded it below so you don't have to miss out! The recording is approximately 1 hour and 7 minutes long.
Enjoy!

1 July 2019

2020 Grant Applications are closed

Our 2020 Grant application period has now closed. Currently our Grants Assessment Committee, headed by Professor John Grigg of The University of Sydney School of Medicine, are assessing the applications. Applicants will be notified whether they are successful before 31 December 2019.​

30 November 2018

2019 grant announcements

Congratulations to Dr Livia Carvalho from the Lions Eye Institute in Perth, Professor Nigel Lovell from the University of NSW, Dr Michael O‘Connor from Western Sydney University, and Dr John De Roach from the Australian Inherited Retinal Disease Registry and DNA Bank, for being awarded Retina Australia Research Grants for 2019. These grants have a total value of $159,900.

This brings the total amount provided by Retina Australia for research since these grants were established twenty years ago, to more than $5.5 million dollars.

Dr Carvalho‘s project is entitled ― Dual AAV retinal gene therapy approach for Usher 1F treatment. Professor Lovell will be studying the topic ― Improving the global acceptance of retinal prostheses: Assessing the influence of different stages of retinal degeneration on selective activation of retinal ganglion cells; and Dr O‘Connor will be investigating ―the mechanism by which C.1 rescues some functions in Best Disease Retinal Pigment Epithelium.

The Australian Inherited Retinal Disease Registry and DNA Bank team under the leadership of Dr De Roach will continue their maintenance and development of the Registry and DNA Bank. We look forward to hearing reports of this work over the next twelve to eighteen months.