|
|  |
We Are Fighting Blindness
21 June, 2023
| |
|
Hello Fighting,
Welcome to the June issue of our newsletter, We Are Fighting Blindness.
We are delighted to report that it has been very a busy time here at Fighting Blindness HQ since our last update to you.
We have lots of news to share below, covering community fundraising events, a new podcast episode and some important Science Communications website updates. We know that these website changes will be a valuable source of information for you and we're excited to tell you all about them below.
We are also thrilled to share some fantastic national media coverage that we recently featured in.
It would be remiss of us to indicate that all of the news below is positive.
We must acknowledge our deep frustration that an update on an application for reimbursement being considered by the HSE in relation to Voretigene Neparvovec (Luxturna) is not yet forthcoming. There has been an unacceptable delay in the process and we have a small update for you below regarding this.
We continue our planning work for the Retina International World Congress in June 2024. Our Scientific Committee for the event is working to develop the programme and speakers and we will have lots to share on that over the coming months.
None of the below work would be possible without you. We appreciate your support in helping us to spread the word about the vital work we are doing.
We believe that sight loss can be reversed. Your support is helping us to achieve this.
Thank you, from all at Fighting Blindness.
| |
Success for the participants of the Vhi Women's Mini Marathon and the Cork City Marathon: | |
Pic: Participants of the Cork City Marathon. | |
|
Community fundraising events took centre stage with the great success of our supporters at the Cork City Marathon and Vhi Women's Mini Marathon. We had a large group of participants taking part in both events, with many far exceeding their original fundraising targets.
We were so happy to appear on the front page of the Irish Examiner and the inside pages of the Irish Daily Star and The Irish Sun with a beautiful shot of Lisa Delaney being greeted by her children after crossing the finish line in the Cork marathon. Both children were wearing Fighting Blindness branded orange t-shirts.
The beautiful image was captured by Darragh Kane, a Cork-based photographer. All funds raised by the participants will go towards essential vision research into finding cures and treatments for blindness.
| |
Pic: The front page of the Irish Examiner on June 5, 2023, featuring Fighting Blindness supporter Lisa Delaney, being greeted by her two children after crossing the Cork City Marathon finish line. | |
|
We could not have asked for a more engaged and motivated group of people to have fundraised for us and we are so grateful to each and every person who took part and supported us on the day.
Step by step you are bringing us closer to finding cures.
| |
Fighting Blindness V.I.P. Network and Retina Network Ireland networking coffee morning: | |
Pic: Participants of the V.I.P. Network/Retina Network Ireland coffee morning. | |
Research is central to all that we do here at Fighting Blindness. We set up the V.I.P. Network to empower those living with sight loss to become a central part of research. 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).
We recently hosted a coffee morning to allow the members of our V.I.P. Network an opportunity to meet with vision loss researchers from Irish universities. There was great discussion on the day about the latest sight loss research taking place in Irish universities and we had very positive feedback from the event, from both researchers and V.I.P. Network members. We look forward to hosting more networking events again soon.
We have been engaging with our V.I.P. Network regularly about various opportunities regarding research education and engagement. For example, we recently hosted a Science-Communications seminar with some members to hear feedback on how we can better communicate the latest research that we are funding.
If participating in the V.I.P. Network sounds like something of interest to you, you can register here or through the button below:
| |
You can learn more about the network from our two explainer videos below: | |
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, Research Officer, Fighting Blindness talks about why public and patient involvement in research is so important. | |
New updates on the Fighting Blindness Research section of our website: | |
Pic: Screengrab of the new website updates on the Fighting Blindness website. | |
|
We have listened to your feedback and we hear you when you say that you want to learn more about the researchers we work with and the projects they are working on.
We have just launched a new Meet Your Researchers section on our website, where you can learn more about our current and previously funded projects and researchers.
Mini-interviews are now available with our funded researchers, where they explain:
- their research projects in lay terms
- the reasons they joined the field of ophthalmic research
- their hopes for the field of vision research in the coming years
Up-to-date videos and photos are provided too. We hope you enjoy exploring the new content and that you find it informative and useful in learning more about the latest research we are funding.
We will profile one researcher in every newsletter going forward. Our first profile is of Professor Breandan Kennedy, which you will find below this section.
You can click on the button below to access the full details of the new Meet Your Researchers page:
| |
Pic: Professor Breandan Kennedy | |
|
The first researcher profile that we want to share with you is of Professor Breandan Kennedy. Prof. Kennedy is a Professor in the School of Biomolecular and Biomedical Science at the University College of Dublin (UCD). He is also the newly appointed interim Director at the UCD Conway Institute.
In 2021, Professor Kennedy was awarded a grant to continue research on zebrafish models of Inherited Retinal Disease (IRD). This work had previously been funded in part by Fighting Blindness. The award allowed for this important research to continue while Professor Kennedy sought further, more substantial funding for the research.
We asked Prof. Kennedy to explain the overall aims of the project he is working on, including how it could have an impact on those affected by sight loss:
| |
"This bridge funding of €50K enables us to sustain our research on zebrafish models of IRD. For many IRD genes, it is unclear why gene changes cause impaired vision, which gene variants are pathogenic or benign and which treatment interventions are most appropriate for each patient." | |
We also spoke to Prof. Kennedy about the results of the research work being undertaken: | |
"Better understanding of the mechanisms leading to impaired vision has been garnered, leading to therapeutic targets that can be pursued. We have successfully create zebrafish lines, humanised to express human IRD genes." | |
|
You can access the full profile of Prof. Kennedy here or by clicking through on the button below.
We look forward to sharing more researcher profiles with you in all future We Are Fighting Blindness newsletters.
| |
|
We are delighted to be able to bring the knowledge and experience of Ben Shaberman, Vice President, Science Communications, Foundation Fighting Blindness and Dr Rachel Bermingham, Research Manager with Fighting Blindness to you in a webinar we are hosting on June 28, 2023.
Webinar date:
The webinar will take place on Wednesday, June 28, 2023 at 5pm-6pm.
Topics:
The webinar will cover two topics:
- Public and Patient Involvement (PPI) and the VIP Network
- Research and clinical updates on Inherited Retinal Diseases (IRDs) and AMD.
Questions for speakers:
Please submit any questions for the speakers ahead of the webinar to Research@FightingBlindness.ie. The deadline for questions is Monday 26th June.
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 button:
| |
Pathways to Personalised Healthcare, with Fighting Blindness CEO, Finbarr Roche: | | |
|
Fighting Blindness CEO,
Finbarr Roche
| Pathways to Personalised Heathcare Podcast | |
|
Our CEO, Finbarr Roche, spoke with Jonathan McCrea and Retina International CEO, Avril Daly in a podcast series, Pathways to Personalised Healthcare, an initiative by Roche. They spoke about Irish and European healthcare policies in the field of ophthalmology and how both organisations are assisting and empowering patients living with various eye disorders.
They discussed the importance of ensuring the right infrastructures are in place in order to be able to deliver personalised care from the moment of diagnosis all the way through the life cycle of that condition and the work that needs to be done in Ireland to get to that point.
Our CEO also emphasised the work of Fighting Blindness, and how we are tirelessly working towards finding cures for sight loss. You can listen to the full podcast here or through the button below:
| | |
Directions Peer Support Group: Call for new participants. | |
|
We are delighted to announce that our peer support group for young people in the 18-30 age range is back!
Young adults who are living with sight loss may face particular challenges and difficulties. Priorities relating to study, embarking on further education, job-seeking, securing independence and relationship difficulties can often be difficult to navigate and manage.
During these times many people find it useful to talk through their feelings and experiences with someone outside their usual circle of family and friends. Often by meeting with others who have faced similar difficulties, vital support can be found.
The group will take place once a month from 6:30pm – 8pm. Day to be confirmed.
Please register your interest by emailing: InsightGroups@FightingBlindness.ie.
| |
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 has been in the system for 1,362 days [c.45 months] as of Friday, June 16, 2023.
The lack of transparency throughout the HTA process for Luxturna remains perturbing. According to our most recent communication, Luxturna reimbursement has been delayed, and we are stonewalled when trying to find out why we cannot be told the reason for the delay.
Zolgensma, a gene therapy for skeletal muscular atrophy, was reimbursed 542 days after the NCPE Application. As yet, patient organisations are not routinely provided with timely information.
Stakeholder groups and patient organisations should be accredited and informed at each significant step to transparently map the process.
We continue to advocate for reimbursement and will update you as soon as we have more news to share.
| |
Save the date! Join Fighting Blindness on the Glendalough Trail: | |
|
We will soon be opening up registrations for the 2023 Glendalough Trail. This is a really important event in our community fundraising calendar and is always a very popular event. Make sure to save the date now! We will be in touch again very shortly with registration details.
Glendalough Trail 2023 takes place on Saturday, October 21, 2023.
Stay tuned for further updates!
| |
Follow us on social media to keep up to date with our latest news: | |
|
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 Twitter, Facebook, LinkedIn, Instagram 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 at Communications@FightingBlindness.ie or phone us at:
01 6789 004.
Kindest regards,
Fighting Blindness
| |
Our social media channels: | | | | |
