Retina Australia

The Geographic Atrophy: We Can't Wait and See report, launched at Parliament House in Canberra last week, highlights the urgent need to address the impact of geographic atrophy (GA), a progressive retinal dystrophy which is one of the leading causes of loss of vision and blindness. As a member of the Advisory Committee to this report along with other leading eye health organisations, Retina Australia is helping raise awareness of the $1.8B cost per year of GA in Australia and its significant impact in the community. This Australian-first report provides the true cost of GA vision loss, with both financial and social costs identified, along with key recommendations to improve the lives of Australians living with GA. To read more about the study and to download the report, visit: https://retinaaustralia.com.au/geographic-atrophy-we-cant-wait-and-see/
This report was sponsored by Apellis Australia.

Retina Australia was delighted to engage with government, industry representatives, health peak bodies, academia and fellow patient advocacy groups at PharmAus24 hosted by Medicines Australia at Parliament House, Canberra. This year’s theme was focused on the urgent need for Australians to have faster and more equitable access to medicines. Thank you to all those who took part in our Do It in The Dark awareness activities including parliamentarian Jerome Laxale MP and Medicines Australia Board Member Professor John Skerritt AM. Many thanks to Johnson & Johnson ANZ for its support to Retina Australia to co-exhibit and help raise awareness for inherited retinal disease.

We warmly invite you to join our community as members of Retina Australia or renew your membership, with a common interest to support people affected by . We are delighted to provide two new benefits to members with our Membership Partners Optometrist Warehouse and Warehouse and
Find out more and join at: https://tr.ee/TTv33oe8bE

Thank you so much for your donation to our 2024 Annual Appeal. Your generosity will allow Retina Australia to continue to support its community of Australians affected by inherited retinal disease and move closer toward our Vision of a World Without Inherited Blindness.

Pop on your coolest shades and raise awareness today for World Sunglasses Day! It is important to wear sunglasses to protect your eyes from damaging UV rays, even in winter, and especially skiing, boating and at the beach. Share a selfie in your sunnies and don’t forget to and tag Retina Australia and Specsavers Australia. Read about what sunglasses you should wear and get your discount code for some new glasses at: https://tr.ee/f4qBwKM-EY

After clinical trial success, there may be a new treatment coming for retinitis pigmentosa (RP). Read about this potential optogenetics gene therapy called MCO-010 which is targeted at treating all patients with RP, not just those with a specific gene mutation at https://tr.ee/cCICbF5leE.

To keep up to date with latest research developments subscribe at https://tr.ee/k6OeQqQORI

Vision Loss Priority Setting Partnership. Expressions of interest to participate in two online workshops to finalise the Top 10 list of research priorities are now open until 30 June. These workshops will be held online on 8th and 9th August. If you are selected to participate in the workshops and are attending as someone with lived experience, you will be reimbursed for your time at $40 per hour via gift card. Find out more at: https://tr.ee/FrMG2gVbU5

Get ready for World Sunglasses Day next Thursday 27 June. Join us to raise awareness about the importance of protecting your eyes from damaging UV rays by sharing a selfie wearing your coolest shades. Don’t forget to hashtag and tag . Read about the risk to permanent eye damage even during the Australian winter and get your discount code for at this link: https://tr.ee/f4qBwKM-EY.

Did you know that there are first-time treatments that may be coming to Australia for geographic atrophy? Geographic atrophy (GA) is an advanced form of age-related macular degeneration (AMD).
Read about GA and these possible new treatments on our website at: https://tr.ee/A1yvu6YtGy

Our June 2024 Bi-Annual Newsletter, the Retina Reporter, is out NOW! Highlights include a rundown of our key events and activities, research grant summaries on gene editing for Usher syndrome and a new way to treat AMD, a spotlight on a past grant awardee, emerging treatments for geographic atrophy, an article on a potential new optogenetics treatment for retinitis pigmentosa and the launch of our World Sunglasses Day campaign.

You can read the newsletter on our website at: https://retinaaustralia.com.au/support/newsletters/ or SUBSCRIBE FOR FREE updates here: https://retinaaustralia.com.au/subscribe/

CLINICAL TRIAL OPEN FOR PARTICIPATION
The most recent addition to our IRD Research Project and Clinical Trial Register is a clinical trial for people living with a PRPF31 or RP11 mutation-associated retinal dystrophy. This trial is called An Observational Clinical Trial of PRPF31 (RP11) and is currently recruiting participants in Australia. It aims to observe the progression in patients with the inherited retinal disease (IRD) retinitis pigmentosa 11 (PRPF31 or RP11) over the period of four years.

Assessments will be completed to measure and evaluate structural and functional visual changes including those impacting patient quality of life associated with this inherited retinal condition and observing how these changes evolve over time.

You will be offered compensation for your time, and for travel (flight and car), parking, lodging, and meals. Locations for this trial include the Lions Eye Institute, Western Australia and the Centre for Eye Research Australia, Melbourne.
For more information about this trial, visit https://clinicaltrials.gov/study/NCT05573984 or email [email protected].

Retina Australia recommends seeking advice from your eye care professional (ophthalmologist or optometrist) about participation in any clinical trials.

Join us for a Research Update Event on 16th May 2024 at the John Curtin School for Medical Research (JCSMR) at the Australian National University in Canberra. It will also be streamed live for viewers around the country who cannot attend in person.
• Discover emerging treatments in geographic atrophy, a late stage of age-related macular degeneration (AMD) – by Dr Carla Abbott, Centre for Eye Research Australia and University of Melbourne
• Learn about how targeting inflammation can protect against retinal degeneration – by Dr Adrian Cioanca, Australian National University
• Hear how using the message of exercise may prevent blindness – by Nick Bariesheff, Australian National University
Full details of the event are available at: https://retinaaustralia.com.au/support/events/
With thanks to our key event sponsor Apellis

is the perfect opportunity to celebrate all the women in our lives, and with the theme this year being we want to highlight all the women in our (IRD) community.

For those living with an IRD and those caring for someone with an IRD we celebrate your strength, your humility and your resilience. Different abilities do not mean lesser. Everyone has something to bring to the table, a gift that is unique to them. This take the opportunity to celebrate these differences, know your worth and demand your seat at the table.

You are seen, you are heard, you belong.
Don’t let anyone dim your light, no matter how much darkness may surround you. Shine bright and help others around you to do the same.



Image description: a black and white image of a woman making a heart shape with her hands in front of her face so her eye is showing through the heart. The purple international women’s day banner runs along the bottom of the frame.

Retina Australia was delighted to help raise awareness for Inherited Retinal Diseases (IRD) with our CEO Julia Hall and Board Director Jane Cherry invited as plenary panel guest speakers at the recent Janssen ANZ Company Conference 2024, alongside Professor Robyn Jamieson and Professor John Grigg.

Jane and Julia also had the pleasure of presenting in more detail at the workshop on the following day to engage in further discussions about Retina Australia’s mission and the experiences of patients living with an Inherited Retinal Disease.

Retina Australia looks forward to working collaboratively with all industry partners to support the Australian IRD Community.

Today is ,

Rare Disease Day is a really important date in our calendar to raise awareness and generate change for all people living with rare conditions like an .

There are 300 million people worldwide living with a rare disease who all deserve equitable access to diagnosis, treatment, health, social care and opportunity. So today is an important date in the calendar to elevate the voices of the patient community and advocate for change.

A big thank you to ConnectGroups Support Groups Association WA Inc. who have been sharing Retina Australia information and support materials throughout this week’s Rare Disease Expo at Perth Children's Hospital and Health Service and Fiona Stanley Hospital in WA.

In the February edition of the you can read about what’s been happening during and how you can join in the fundraising effort through our Do It In The Dark campaign!

We have an article looking at how people living with an inherited retinal disease (IRD) can contribute to the progression of research by donating tissue samples, an update on a new research study reporting on the first worldwide survey of female carriers of X-linked inherited retinal diseases (IRDs) and all the ways you can get involved to support Retina Australia.

Subscribe today so you never miss an update: https://retinaaustralia.com.au/subscribe/

Have your burger and support us too!

A reminder to our Melburnians that you can support us at Grill’d this month by allocating the token you receive with your meal to Retina Australia!

For the month of February Retina Australia will be one of the nominated charities in the Grill’d Local Matters campaign at the following stores: Flinders Lane, Southern Cross, Degraves St, Southgate, Melbourne Central, Emporium, South Melbourne and QV.

A big thank you to the staff from the Southern Cross store who are beautifully modelling our custom-made glasses that replicate tunnel vision, a common symptom for some Inherited Retinal Diseases.

Spread the word and get your friends and family to a Melbourne Grill’d to support us today!

Looking for ideas for your Do it in the Dark fundraising event? Brian Light, a Retina Australia member from South Australia, hosted a lunch with friends.

All of Brian’s friends wore our custom-made glasses throughout the lunch. Seeing the world through these glasses is a great way to understand some of the challenges people living with can face.

Having a narrow field of vision can make even the simplest of tasks, like having lunch, quite difficult. With a narrow field of vision things like locating your utensils, noticing wait staff approach or reaching across the table without knocking things over can be challenging.

Do it in the Dark fundraising events are an effective way for people with Retinitis Pigmentosa to share the experience with friends and family, and for people wanting to learn more about the condition.

Sign up for your fundraising kit today to receive your custom-made glasses! All the information about Do it in the Dark can be found at https://retinaaustralia.com.au/help-us/retinitis-pigmentosa-awareness-month

Looking for ways to get involved during Retinitis Pigmentosa Awareness month? Why not sign up for our fundraising campaign ‘Do it in the Dark’?

Do it in the Dark is a unique Retina Australia event which aims to create awareness about inherited retinal diseases and raise funds to support life-changing medical research and provide information and support.

By signing up, you will receive your fundraising kit with our custom-made glasses that simulate tunnel vision which can be a common symptom of people living with retinitis pigmentosa.

The glasses are designed to demonstrate and raise awareness of the challenges for people living with a narrow field of vision. You can pick any activity for your friends and family to complete while wearing the glasses. It could be a treasure hunt, an art class, a walk or a jog with a sighted guide. Whatever activity you choose, we ask that you make sure it can be done safely.

Or if you’re stuck for time and ideas you can try out our new online digital puzzle! You can set the number of pieces and time yourself and others to see who manages the fastest!

All the information can be found at https://retinaaustralia.com.au/help-us/retinitis-pigmentosa-awareness-month/

Get involved today and don’t forget to tag us in your photos!

Calling all burger loving Melburnians!

You can support Retina Australia this at your local Grill’d!

For the month of February Retina Australia will be one of the nominated charities in the Grill’d Local Matters campaign. Simply place the token you receive with your meal into the jar for Retina Australia at any of the following stores: Flinders Lane, Southern Cross, Degraves St, Southgate, Melbourne Central, Emporium, South Melbourne and QV.

These stores also have our special glasses on site so you can see the world through the eyes of someone living with .

Thank you to the staff at the Degraves Street store who can be seen in the photo modelling the glasses for us!

February is so we thought we’d share some facts you may not have known about Retinitis Pigmentosa.

While these conditions are considered rare diseases, the effects on the lives of those impacted can be immense.

You can help by spreading the word, sharing these posts on your socials or by donating to to help us in funding the best and brightest in research.

Find out more on our website: https://retinaaustralia.com.au/help-us/retinitis-pigmentosa-awareness-month/



Photo by Egor Vikhrev on Unsplash

📸 Image description: close up of a blue eye with the following text.
(RP) is the most common form of .
in Australia, it is estimated that one in 3,000 people has RP, which equates to approximately 8,900 individuals.
Over 50 different genes have been identified that can cause RP and It is likely that researchers will discover more genes responsible for RP in the future.
There is currently only one treatment available for a subtype of RP called RPE65-associated retinal degeneration
Researchers are working hard to develop and trial new treatments and they need our support in raising awareness and funds to support their research.

February is awareness month.

Retinitis pigmentosa, also known as RP, is an that causes loss of vision and blindness. The condition is slowly degenerative, but the rate of progression and degree of visual loss can vary from person to person, and even among affected members of the same family. It is the most common form of and in Australia, it is estimated that 1 in 3,000 people has RP, which equates to approximately 8,900 individuals.

This month we want you to join us in raising awareness, sharing your stories and what you want people to know about Retinitis Pigmentosa.

Let’s start the conversation today. Check out our website and stay tuned to our socials for all the ways you can get involved!

https://retinaaustralia.com.au/help-us/retinitis-pigmentosa-awareness-month/

,

You are invited to attend an Patient & Family Day in Sydney on Saturday 23 March 2024.

At the event hosted by UNSW Sydney and the Children's Medical Research Institute, you’ll learn about current research into including advanced therapies from experts in the field, connect with others, and share your experiences.

Attendance is free but positions are limited so please register here: https://unsw.au1.qualtrics.com/jfe/form/SV_4NGMv69yQTJ6LAy

We look forward to seeing you

In the January edition of the you can read all about the recent updates we’ve made to our website to include the latest on emerging treatments, , ways to take care of your eyes and so much more.

You can check out the new projects listed in Australia's IRD Research Project and Register.

And read all about what’s coming up in February for awareness month.

Follow the link below to read more and subscribe: https://retinaaustralia.com.au/subscribe/

Get ready for the Festive Season with an order from Goodwill Wine!

Goodwill Wine sources great wines in quantities too small to be of interest to big online wine players which is why it can offer quality rated wines at competitive prices. Since it began, Goodwill Wine has donated over $500,000 to Australian charities.

50% of the profit from your purchase can be donated to and new shoppers are eligible for a 10% discount.

To find out more or place an order, check out our website for all the details: https://retinaaustralia.com.au/help-us/goodwill-wine/

Our 2023 is dedicated to funding research projects to find new treatments for inherited retinal disease.

Donate to today to give hope to those living with inherited retinal disease.

All the details are on our website: https://retinaaustralia.com.au/help-us/2023-christmas-appeal/

Can lab-grown eye tissue test gene therapies for blindness?
Could models of muscle help us understand heart problems?
Bring your questions to this free public event at 5.30pm today!

Register via the link below to attend online

Stem cells and Organoids: new insights into health and future therapies Can lab-grown eye tissue test gene therapies for blindness? Could models of muscle help us understand heart problems? Ask your Qs!

Vision Loss Priority Setting Partnership and an Introduction to Stem Cell & Gene Therapies

Saturday 28th October, 2.00pm AEDT

Retina Australia is delighted to welcome Dr Eden Robertson to present on the Vision Loss Priority Setting Partnership, and Vivienne Kaiser to provide an introduction to Stem Cell and Gene Therapies.

Join us at this free webinar. For more information and registration here: https://tr.ee/MLJL1MpbdZ