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We Are Fighting Blindness


12 September, 2023

Empowering Change and Celebrating Success!

Hello Fighting,


Welcome to the September issue of the Fighting Blindness newsletter, We Are Fighting Blindness.


We are delighted to reconnect with you since our last newsletter in June. Over the past months, we've been hard at work, and today, we're thrilled to share the many exciting projects and initiatives that we have been developing since we last updated you.


From an upcoming Age-related Macular Degeneration webinar to the much-anticipated Glendalough Trail Run, we've been tirelessly planning and preparing for an action-packed autumn season.


One particularly heartwarming achievement we're incredibly proud of is our collaboration with The Rotunda Foundation. Together, we've championed a vital cause - funding a digital retinal camera at The Rotunda Hospital, dedicated to the eye-screening of premature babies. Early detection is key to positive outcomes and we are so proud of this achievement. We also are delighted to share some positive news regarding the reimbursement of Luxturna in Ireland.


At the heart of our mission is research, and our Research team has been on a mission of their own. Their tireless efforts in launching funding and grants are opening new avenues for groundbreaking work to take place. Furthermore, they've continued to diligently enhance the Research section of our website, allowing you to delve deeper into the impactful projects and research work we support. In this issue, we are focusing on the research work of Dr. Joanne O'Dwyer, NUI Galway.


None of this work would be possible without you. As a supporter of our charity, you are the driving force behind every achievement, every life transformed, and every step closer in our vision to cure sight loss. Your unwavering commitment empowers us to continue in our goal of reversing sight loss.


Stay tuned for more exciting updates in this newsletter, and thank you for being a vital part of our journey. Together, we are changing lives and shaping a world where sight loss can be reversed.


Your support is helping us to achieve this.


Thank you, from all at Fighting Blindness.

Join us for our free Research Webinar on Age-related Macular Degeneration

Fighting Blindness is delighted to host an online webinar, on Age-related Macular Degeneration (AMD) with Mr Tomás Burke (Mater Misericordiae University and Mater Private Hospitals, Dublin) and Sean Poland (Vision Sports Ireland).


After the success of our first research webinar of 2023, we are excited to announce our second free webinar, this time focusing on Age-related Macular Degeneration (AMD).


AMD is a progressive eye disease that affects up to 10% of adults over 65 years of age and is a leading cause of severe vision impairment and blindness in this age group.

Image of two people on a blue background. On the left is Tomas Burke. On the right is Sean Poland.

Our first speaker, Mr Tomás Burke is a Consultant Ophthalmologist specialising in Medical Retina, Uveitis and Cataract, based at Mater Misericordiae University and Mater Private Hospitals, Dublin. Mr. Burke will speak about the current clinical care for AMD.


Our second speaker, Sean Poland is an Education, Training and Participation Coordinator, at Vision Sports Ireland. Sean will speak about sports and physical activities for people living with AMD.


Webinar date:

The webinar will take place on September 20, 2023, from 5 pm-6 pm.


Registration:

The platform we are using for the webinar is Zoom. Registration is required in order to access this event.


Please register here or by clicking on the below link:

Webinar Registration

Fighting Blindness and The Rotunda Foundation team up to fund brand new retinal camera for premature babies

Dr Sarah Chamney and Dr Mike Boyle, Rotunda Hospital standing in front of a Fighting Blindness banner.

Image: Dr. Sarah Chamney and Dr. Michael Boyle, Rotunda Hospital.

Fighting Blindness and The Rotunda Foundation teamed up to raise funds for a brand-new Digital Retinal Camera for The Rotunda Maternity Hospital, Dublin, to enable early diagnosis of retinal conditions in premature babies.


Smaller and more premature infants survive due to advances in neonatal care. However, babies born earlier are at a higher risk of a number of dangerous conditions. Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants. In 2020, the sight-threatening condition was discovered in 21 of the infants in the Rotunda neonatal intensive care unit. When detected, it can be treated.

save my sight change my life image of a newborn baby

The RetCam allows staff to capture a digital image of the back of the infant’s eyes. Having this machine in place, allows the team to make the best decisions about the care and treatment of patients.



Sarah Chamney, Paediatric Ophthalmologist said, “Using Retinal photography is much less stressful for infants. Having this piece of equipment in the Rotunda will be hugely beneficial to the infants.”


We recently visited The Rotunda to witness the RetCam in action and meet the amazing doctors who use the life-saving sight technology. Your support is invaluable in making sure this incredible equipment is accessible and available to those who need it. We’re so grateful!

Donate today to help us on our vital mission to cure sight loss

Luxturna: Now reimbursed in Ireland

The Cure is Waiting advert. A loading wheel centred in an eye shape, with the text: The cure is waiting, we shouldn't be.

The NCPE Application for the reimbursement of Voretigene Neparvovec [Luxturna] – the first gene therapy to reverse sight loss for a small cohort of patients exhibiting the biallelic RPE65 gene – was submitted on 23 September 2019. Luxturna was in the reimbursement system 1,435 days [c.47 months] on Monday, 28 August 2023. We noticed that around this time a note was placed on the HSE website to suggest that the reimbursement process is now approved.

 

Fighting Blindness did present to the working group examining the Mazars Report into the availability of new medicines and treatments in Ireland.

"This is the first genetic treatment for inherited sight-loss conditions based around gene therapies. This is great news, particularly for children in Ireland who, up to now, faced the prospect of slowly losing their sight as they grew up.


- Finbarr Roche, CEO, Fighting Blindness

Luxturna has been cleared by the EMA to treat Leber Congenital Amaurosis and Retinitis Pigmentosa – both caused by biallelic mutations to the RPE65 gene.

"We know that the therapeutic supports required to roll out the treatment are already in place. Ophthalmologists and medical support staff have been trained so that those with the RPE65 mutation can receive Luxturna within weeks.”


- Finbarr Roche, CEO, Fighting Blindness

We welcome the news that Luxturna [voretigene neparvovec] will be reimbursed through the HSE.

Research News

We are committed to continually keeping our members and the public up to date both on the research that we fund and the latest news from the wider vision loss research world. All of our most recent updates can be found on our Research News page on our website. Be sure to check this webpage and our social media channels for our latest updates on research.


One recent research item that may be of interest to members is a non-scientific summary we produced of a scientific paper on Stargardt disease published by researchers based in Trinity College Dublin. The research aimed to help provide a more accurate genetic diagnosis for people with Stargardt disease. Of note, Irish Stargardt patients were a key part of the study. Read about the interesting findings here.   

Research profile: Dr. Joanne O'Dwyer

The image shows a headshot of Dr. Joanne O'Dwyer on a blue background with designs including the double DNA helix and a microscope. The photo includes the Fighting Blindness logo and the website link www.FightingBlindness.ie.

In addition to updating our website, we have also started creating podcasts to share updates on the research that we fund in audio format. Our most recent podcast features our funded researcher Dr. Joanne O’Dwyer based at NUI Galway. Following a competitive application process, we awarded Dr. O’Dwyer an Emerging Researcher Award in 2022 for her project ‘A novel formulation for removal of macular oedema.’ The award amount was €10,000.


Dr. O’Dwyer has experience working in a variety of environments having worked in community and hospital pharmacy. Dr. O’Dwyer is currently working in the lab of Prof. Garry Duffy in the Anatomy Department of the School of Medicine at the University of Galway.


We asked Dr. Joanne O’Dwyer to explain the overall aims of the project she is currently working on, including how it could have an impact on those affected by sight loss. Listen to the podcast below or here.

Video of Joanne O'Dwyer, NUI Galway

We also have a full transcript of the interview with Dr. O'Dwyer on our website here.

P.P.I Review Panel

Fighting Blindness runs different funding calls to support our mission in funding vital research into vision loss. All applications must undergo a robust review process before any funding is awarded.


To make sure the patient voice is front and center in making these important funding decisions, we recently began recruiting for a Public and Patient Involvement (P.P.I) Review Panel.


The role of the P.P.I Review Panel will be to help us review research funding applications, provide feedback to applicants, and decide what projects should be funded. No experience is needed for the panel – we want your expertise as someone living with sight loss.

A group of people seated in a circle having a discussion.

We will be running a half-day training session online on Tuesday, 3rd October from 10am-1pm where we will cover all you need to know to review these applications.


The commitment will be to review funding applications in October and November this year.


The panel is open to all members of the V.I.P Network, whom we regularly reach out to with various research and advocacy-related opportunities.


If joining our P.P.I Review Panel or getting involved in research-related activities is something you would be interested in, you can register for our V.I.P Network through the link here.

Register for our V.I.P. Network here

Watch back: Ben Shaberman, Foundation Fighting Blindness

Watch/listen back to our free Research webinar that took place online on June 28, focusing on:


  • Public and Patient Involvement (PPI) and the Visually Impaired Person’s (V.I.P.) Network - Dr. Rachel Bermingham, Research Manager (Academic Projects and Impact), Fighting Blindness


  • Research and clinical updates on Inherited Retinal Diseases (IRDs) and Age-Related Macular Degeneration (AMD) - Ben Shaberman, Vice President, Science Communications, Foundation Fighting Blindness
Research webinar: Dr Rachel Bermingham and Ben Shaberman, Foundation Fighting Blindness

Don't hesitate to get in touch with us at Research@FightingBlindness.ie for any further queries or to provide you with the slides that were presented at the webinar.

Glendalough Trail: The countdown is on!

An image of two people running on the Glendalough Trail. They are wearing orange Fighting Blindness t-shirts.

Our fantastic Glendalough Trail Run fundraising event in aid of Fighting Blindness is open for registration! Join us for a fun day and challenge yourself to a unique and rewarding experience in Glendalough.


Taking place on Saturday, October 21, our 2023 event will provide an unforgettable running experience with challenging trail runs. Not an experienced runner? No worries! A shorter walk/jog option is also available for those who want to participate non-competitively!


From stunning views to helping raise money for Fighting Blindness, why not take part in this epic day out while also helping us raise vital funds for our research work into finding cures for people living with sight loss? Whether you’re a competitive runner or a leisurely walker, this fantastic experience will be enjoyable and memorable.


Event date: Saturday, October 21, 2023.

Register here today: https://glendaloughtrail.ie/

Glendalough Trail Run Registration

A note of thanks and remembrance for two loyal Fighting Blindness members:

Fighting Blindness would like to extend our condolences and sincere gratitude to the families and friends of two loyal Fighting Blindness members who sadly passed away recently.


We send out sincere thanks to the family and friends of Roslyn Allman who passed away on Tuesday, July 11, 2023.


Roslyn’s family kindly requested mourners, if desired, to donate to our charity. €300 has been generously donated by Roslyn Allman’s friends and family.


Roslyn Allman, Crow Lane, Portarlington, Co Laois and formerly of Avondale, Portarlington.


May she rest in peace.

 

We would also like to extend our condolences and sincere gratitude to the family and friends of Freda McGarry who passed away on Friday, June 16 2023.


Freda lived with Retinitis Pigmentosa (RP) and her family kindly requested mourners, if desired, to donate to our charity. €475 has been generously donated by Freda McGarry’s friends and family.


Freda McGarry, Rathcore, Enfield, Co Meath and formerly of Skeaghbeg, Headford, Co. Galway, died peacefully at Parke House Nursing Home.


May she rest in peace.

Paris2Nice: Thank you to Mark Renaghan!

Paris2Nice is a unique and exceptional non-competitive charity cycle that raises much-needed funds for charities throughout Ireland.


For the past 6 months, Mark Renaghan prepared for the 6-day cycling challenge – all to raise vital funds for Fighting Blindness.


Covering approximately 700 kilometers, he started in Paris on September 1 and completed the epic adventure in Nice on September 7.

A photograph of Mark Renaghan in his cycling gear, holding his bike above his head.

Image: Mark Renaghan, after completing the Paris2Nice charity cycle.

We want to thank Mark for choosing to take on this epic challenge in aid of Fighting Blindness. The support of Mark and everyone who has contributed to his campaign is helping us with our core work, finding cures for sight loss.


If you would like to contribute to Mark’s fundraiser there is still time. You can donate directly here:

https://www.idonate.ie/fundraiser/MarkRenaghan


Thank you so much to Mark, from all at Fighting Blindness!

Please consider making a donation. Together, we can change lives.

Follow us on social media to keep up to date with our latest news:

An image of a woman holding a phone. On the phone screen is the Fighting Blindness Twitter page.

Our next quarterly newsletter will be issued in December. In the meantime, if you are active on social media, one further way to stay in touch with us is to follow us on our social media channels.


We are active on TwitterFacebookLinkedInInstagram and YouTube. We will, of course, continue to update you directly via our emails and newsletter.


If you have any questions or feedback please don't hesitate to get in touch with us directly by replying to this email. You can also email us: Communications@FightingBlindness.ie or phone us at:

01 6789 004.


Warmest regards,

Fighting Blindness

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