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We Are Fighting Blindness


March 27, 2023

Laura Whelan and Iris Post. Image of two Trinity researchers in the lab wearing white lab coats and smiling.

Welcome to the new-look Fighting Blindness newsletter!

We are committed to supporting our community. We want to share more of the work we are doing here at Fighting Blindness so that you can understand how your support truly has an impact and makes a difference.


We are excited to announce we have launched a new look newsletter, We Are Fighting Blindness, where we will share our recent Research news, exciting projects, support and advocacy initiatives, and upcoming events that we are working on.


Fighting Blindness is now in existence for 40 years.


Working together we found the first gene linked to an inherited retinal condition. Together we have spent over €20 million on research prioritised by our community. Now we are on the cusp of approval for the first treatment for an inherited retinal condition.


This would not be possible without you. We are grateful for your support and we look forward to communicating with you regularly about all of the latest news from Fighting Blindness.

Dr. Naomi Chadderton, Trinity College Dublin: Interview with Fighting Blindness funded-researcher for IWD2023.

Naomi Chadderton Researcher Trinity College Naomi is standing in her lab wearing a white coat

We marked International Women's Day on March 8 by celebrating and exploring the work of one of our funded female researchers, Dr. Naomi Chadderton, Trinity College Dublin.

Learn more about Dr. Naomi Chadderton here

Dr. Chadderton explains a novel promising gene therapy for many eye diseases including AMD, LHON, glaucoma, optic atrophy and others.

 

A direct link to the subtitles in the above video, in Word format, is available here: Naomi Chadderton video subtitles.

The Fighting Blindness V.I.P. Network is recruiting

From the start of Fighting Blindness, our work was not just about research. It was about answering questions people losing sight had. What caused the condition and was there any treatment? People with sight loss conditions were always at the heart of what we do.

 

Fighting Blindness has set up the V.I.P. Network. Our pioneering idea that the public and patients need to not only feed into but be a part of research is a basic requirement for all research projects called P.P.I. (Public and Patient Involvement). Learn more about the network in our two explainer videos below:

Declan Meenagh Advocacy Officer Fighting Blindness

Declan Meenagh, Advocacy Officer with Fighting Blindness talks about the V.I.P. Network and his own experience of P.P.I. in action.

Dr. Shannon Lee, Fighting Blindness: Learn more about the Fighting Blindness V.I.P. Network

Dr. Shannon Lee, Research Officer, Fighting Blindness talks about why public and patient involvement in research is so important.

Save the date: Retina International World Congress, 2024

Retina International World Congress 2024 banner

Fighting Blindness is delighted to announce that we will be hosting the Retina International World Congress (RIWC24) in Dublin, from June 5-8, 2024.

Read more about the RIWC here

The last RIWC took place in Reykjavík, Iceland in June 2022 and was a hugely successful gathering of retinal experts. Fighting Blindness looks forward to hosting the congress at the Dublin Royal Convention Centre, Radisson Blu Royal Hotel, Dublin.

Membership recruitment campaign: Your Voice Matters

Victoria Smurfit and daughter Evie

Being a member of Fighting Blindness is an act of solidarity.


Fighting Blindness was founded with a simple mission. People were losing their sight and they wanted to know more and maybe one day find a cure. From those humble beginnings around a kitchen table, we have invested over €20 million into world-leading research. The first gene linked to an inherited retinal disease was discovered in Ireland through the work of Fighting Blindness-funded researchers.


Renewing your membership means you will be kept up to date with everything we are doing in Fighting Blindness. Throughout the year we will consult with our members first on decisions that impact you. It also means you are standing in solidarity with people impacted by sight loss.

 

You can sign-up online or renew your membership by visiting our website here or you can join over the phone by calling us on 01 6789 004.

From Malin to Mizen: Peter Ryan takes on one of his toughest challenges yet, all in support of Fighting Blindness

Peter Ryan

We are thrilled to announce that Peter Ryan is going to be taking on one of the biggest challenges of his sporting career to date - all in support of Fighting Blindness. Peter will be running the length of the country in October, from Malin Head to Mizen Head in 5 days, culminating in a celebration of World Sight Day on October 12. We will be working closely with Peter to support him on this challenge and we will soon be launching a video with Peter to explain more. We look forward to sharing this with you very soon.

Upcoming events

VHI Mini Marathon participants wearing Fighting Blindness tshirts pose for a photograph.

The 2023 VHI Women’s Mini Marathon takes place in Dublin city centre on Bank Holiday Sunday, June 4.

If you would like to take part to support Fighting Blindness, please contact our Fundraising team at 01 678 9004 or email [email protected].

Mini marathon runners

For more information about the VHI Women's Mini Marathon Marathon and to register to take part, visit:

https://www.vhiwomensminimarathon.ie/

We would be so grateful if you would keep us in mind as your chosen charity.

Board updates: A note from Fighting Blindness CEO, Finbarr Roche

Finbarr Rocher, Fighting Blindness CEO

Fighting Blindness CEO,

Finbarr Roche

I am delighted to let you know that Dr. Dairine Dempsey has been named as Chairperson of the board of Fighting Blindness.


We also recently welcomed three new board members; James Kennedy, Dee Hopkins and Breandan Ward, who has taken on the role of Company Secretary.


We feel honoured to have such accomplished and experienced additions to the board of Fighting Blindness and we look forward to the insights that each can bring to us as we move forward and grow our organisation.

JCDecaux names Fighting Blindness as a charity partner for 2023 – 2024

The Cure is Waiting ad campaign showing a loading wheel with text The cure is waiting we shouldn't be

JCDecaux recently announced - after a highly competitive application process - that they will be working with five charity partners in 2023 and 2024, one of which is Fighting Blindness.


This is the third time that we have been nominated by the outdoor advertising company. Throughout 2018 – 2022, the partnership provided our charity with significant nationwide outdoor advertising space. For our latest campaign, The cure is waiting, we once again worked with our pro-bono creative agency – In the Company of Huskies. We are massively grateful for the support of JCDecaux and Huskies.


Many people with inherited retinal degeneration do not yet have a clinical grading of their genetic code – a cure may indeed be waiting for unfound recipients. Fighting Blindness finances a patient registry of genetic coding that is utilised for upcoming clinical trials and finding eligible patients for gene therapy. This advert demonstrates that we are waiting. Donations will reduce the wait for many of our community.

Donate today: Your support is helping us to find a cure

#GetRareAware: Fighting Blindness gets behind a new Rare Diseases Ireland campaign

Get Rare Aware Campaign launch including Ivana Bacik, Neasa Hourigan and Fighting Blindness staff outside the Dail

We were delighted to support the launch of a new Rare Diseases Ireland campaign #GetRareAware at the Dáil on March 23. 300,000 people in Ireland are living with a rare disease. Three quarters of these rare diseases are genetic in origin. People are waiting for over two years for the correct diagnosis and we support the campaign to end the wait.


We are asking you to contact your elected representatives to take action on under-resourced genetic services at the Department of Clinical Genetics at Children’s Health Ireland. More information on the campaign and how you can contact your elected representatives is available at www.getrareaware.ie. We look forward to sharing the upcoming meetings planned for the campaign over the course of the year directly with you.

Our Choir Needs You! Join the Fighting Blindness Visionaries Choir

Visionaries Choir Fighting Blindness

The Visionaries Choir is currently looking for new members. If you or someone you know has a visual impairment & an interest in music or singing please get in touch. The choir meets every Saturday morning to practice.

Learn more about the Fighting Blindness Visionaries Choir

Did you know that you can join the choir remotely? Choirmaster Frank and the team use either Zoom or Jamulus for people who live outside the catchment area of Dublin. 


For more information on joining the choir please contact Frank Kelly by email: [email protected]

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