Recording Available: Insights Forum | Thursday, March 26, 2026

Foundation Fighting Blindness
Insights Forum Transcript
March 26, 2026

Maddie Mossman:

Hello everyone, and thank you for joining today's Insights Forum. I'm Maddie Mossman and I work on the foundation's VisionWalk team. Before we get started, I would like to briefly review a few details for the call. Currently, all participant lines are muted and without video. Please be aware that the controls are at the bottom of the Zoom interface. This control bar may collapse when it is not in use. If you prefer to prevent the controls from auto hiding, you can use the following keyboard shortcuts to toggle the always show meeting controls options. If you are using Windows commands, press the Alt key. If you are using a Mac keyboard, press command and backslash at the same time. Today's presentation is being recorded and is available with closed captioning. To activate closed captioning, please select show captions at the bottom of the screen on the Zoom toolbar.

Please note that on today's call, our speakers do have their videos live. However, all of their comments will be provided verbally and there are no slides. Throughout the call, you will be able to ask questions via the Q&A feature at the bottom of the Zoom window. We will address these questions towards the end of the call. If we do not get to your question live, we will follow up over the next week. So please make sure to include your name in your question. You can also submit a question by sending an email to info@FightingBlindness.org. I would now like to turn the call over to our Chief Executive Officer, Jason Menzo.

Jason Menzo, Chief Executive Officer:

Well, thank you so much, Maddie. And good morning everyone. My name is Jason Menzo and I am the CEO here at the Foundation Fighting Blindness. We're so glad to have you join us for our quarterly Insights Forum. Through these calls, we connect with our global community and share updates on our strategic priorities and initiatives. We spotlight progress across the field and we provide a clear view of how we're advancing our mission to accelerate treatments and cures for blinding retinal diseases. I'll be honest, one of my favorite things that often happens on these calls are the many shout-outs that happen in the chat with people checking in from all over the world. I just love that. So if you're joining us today, please feel free to chat in where you're joining us from. We've got hundreds of folks from all over the globe joining us today, and I just love seeing where everyone's coming from.

Today we do have a couple very important topics that we're going to cover on today's call. First off, I'm going to share a very important update, actually several updates, impacting our organization. After I provide those updates, I'm going to hand the call over to Dr. Amy Laster, who's our Chief Scientific Officer. And Amy will provide recent updates on our science award programs and events and the clinical trial landscape. And then following Amy, we're joined by Dr. Todd Durham, who's our Senior Vice President of Clinical and Outcomes Research. And Todd will share information on our My Retina Tracker Registry and no-cost genetic testing program and a new addition to our ongoing UniRare natural history study. And then we're joined today by Anna Wagner, who is our Senior Vice President of Finance. And Anna will review our recent financial performance and highlight any new corporate partnerships. And we're really excited to have Anna join us as a speaker on the call today. She's really a key member of our leadership team, and she reports to Peter Ginsberg, who's normally on these calls, but he's out of town today.

And then after Anna, Mr. Jeff Klaas, who is our Chief Strategy and Innovation Officer, will share the many events and activities coming up that you can get involved with locally in your market or nationally supporting the Foundation's mission. And then following Jeff, we're very excited to have a special guest speaker joining us today, my friend, Avril Daly, who is the CEO of Retina International. And for those who don't know, Retina International is the global patient-led umbrella organization that represents charities and foundations advancing retinal research and health policy across more than 40 countries. Avril will share a snapshot of IRD-related initiatives globally, including our very important jointly-hosted event that we have planned for the summer, United in Vision.

And then following Avril's comments, we will open the call up for Q&A as we always do. And when we get to Q&A, in addition to all the speakers I just mentioned, we have Chris Adams who'll be joining us for the Q&A, who's Our Vice President of Marketing.

With all that said, I want to start today's call with a very special and heartfelt recognition of an incredibly important leader in our community. Earlier this month, our Board Chair, Ms. Karen Petrou, passed away after a private battle with cancer. For those who know Karen and knew Karen, she was an incredible strong leader, a vocal leader, and really an integral part of this community for many, many years.

Karen was diagnosed with retinitis pigmentosa when she was 18, and she knew firsthand what it meant to live with an inherited retinal disease. And she channeled that lived experience really into everything that she did here at the Foundation.

Of the many roles that Karen had in her prolific career, which was truly incredible, she often said that serving as the Chair of the Foundation Fighting Blindness was the greatest honor of her lifetime. I personally had the great privilege of working closely with Karen for many, many years. She was an extraordinary leader, a very kind and thoughtful person, and really she demanded and elevated everyone around her. And in this organization, she elevated and got the very best out of all of us in elevating the way that we operate. Beyond her strategic mind and her incredible work ethic, Karen was a steadying presence. She was principled, she was thoughtful, and she was so, so committed to ensuring that our research and that our programs really served the entire audience of our community, everyone on this call. She loved joining these Insights Forums because she loved hearing about all the different people in our community that are engaging with us.

Karen was the first female chair of the Foundation Funding Blindness, and she leaves a legacy that extends across our entire field from championing BioBonds and federal financial initiatives to advancing inclusive genetic testing and genetic research and vision restoration for those like her with advanced vision loss. She really did move critical work forward, and she demanded transparency and accountability and ensured that our scientific investments were both bold, but also pragmatic and managed with efficiency. I really encourage everyone on this call today to read the beautiful tribute reflecting on Karen's life and service that is available on our website at FightingBlindness.org. And then also the very touching stories that were published in the New York Times and the Wall Street Journal, recognizing Karen's extraordinary life. We're going to miss Karen, I think that goes that saying we're going to miss her leadership, but one of the things that Karen was so passionate about was governance and succession planning.

And due to the strong governance and succession planning that we have as an organization, this is a moment of smooth transition and we are shifting from today to a new future with the foundation. And to that end, we're very excited to announce the appointment of our new board chair, and that's Mr. Jason Morris, who was appointed to succeed Karen as Chair of the Board earlier this month. For those who don't know, Jason is a longtime board director, a parent advocate of our mission, a business executive, and he is entrusted to guide the next phase of the organization's growth and mission. Jason has served on our board since 2017, and most recently he was the Executive Vice Chair of the Board serving as second in command of the board for the last couple of years. He really does understand our mission from every angle, and he brings steady leadership and a deep commitment to the families that we serve at this very critical time for our mission.

The story is that Jason first connected with the Foundation back in 2009 when his then five-year-old son was diagnosed with a condition called retinitis pigmentosa, which obviously many of you know. His particular form of retinitis pigmentosa was caused by a gene called CRB1. What began as a local chapter meeting in St. Louis quickly became a long-term engagement with the Foundation. Over the years, Jason has served as Executive Vice Chair, as a chapter president, as a national trustee, as treasurer of the board, as a board director, and even as one of the original board members of our RD Fund, where he will now serve as vice chair of the RD Fund. In addition to being Board Chair of the Foundation Funding Blindness. Through 17 VisionWalk events and more than a decade of chapter fundraising, including 14 years of annual St. Louis dinners, the Morris family, including Jason, his wife Leslie, his parents, his two beautiful kids. The Morris family really has helped raise an incredible amount totaling over $7 million towards this mission to advance research and expand community engagement and support of the Foundation's work.

Alongside his volunteer leadership, Jason also brings a tremendous track record as a business professional with more than 30 years of executive experience and currently serves as the president and chief operating officer of a company called Courtesy Products. And as board chair, he will work closely with our entire board of directors, our community, our trustees, our executive leadership team and myself, and all of us under Jason's leadership will be focused on advancing our priorities to drive this mission forward. We're so grateful for Jason's leadership and commitment, especially at this very sensitive and important time at the Foundation. With that said, I'd now like to turn the call over to Dr. Amy Laster, our Chief Scientific Officer, who will provide a science and research funding update.

Dr. Amy Laster, Chief Scientific Officer:

Thank you, Jason. As Jason said, I want to hit on this year's grants programs, recent scientific community events, and progress in the clinical trial landscape. In fiscal year 2026, we committed $15.1 million for earlier stage discovery and preclinical research awards, which then fueled the later stage clinical programs. Our science committee recently reviewed and voted on recommendations for new awards for two grant programs, the Brint Family Translational Research Program and the PRPH2 Associated Retinal Diseases Program. The latter is a collaboration with the Nixon Visions Foundation. These projects represent meaningful opportunities to advance patient-impacting therapies. We'll provide a detailed update on all of our new awards across all of our grants programs at our next Insights Forum this summer.

In addition to the award grants we fund, we also organize programs that enable the scientific community to gather and share progress in the development of treatments and cures for the entire spectrum of retinal degenerative diseases.

We hosted our annual Investing in Cures Summit a few weeks ago with more than 185 stakeholders in attendance, including researchers, companies, investors, donors, and families. There were three dozen presenters highlighting their work and accelerating the advancement of therapy-focused research. We also host educational events to provide community members, including eyecare professionals, to provide up-to-date information on advancements in our field. And our most recent eyecare professionals webinar took place earlier this week and focused on regenerative medicine, which represents one of the most promising approaches for IRDs and AMD. The session featured leading experts sharing the latest research on cutting edge stem cell therapies and the advanced imaging techniques essential for evaluating treatment success. The replay of this webinar is currently available on our website under the For Eye Care Providers tab.

I'll close with a quick snapshot of the inherited retinal disease clinical landscape, which continues to be both active and encouraging. Right now, there are more than 60 interventional IRD clinical trials underway across the globe. We're seeing progress across a range of approaches and disease targets.

For example, Octant Bio recently dosed the first healthy volunteer in its Phase 1 trial testing an oral medication for rhodopsin-associated autosomal dominant retinitis pigmentosa, and that study is being conducted in Australia and represents a non-gene therapy approach for this form of disease.

At Opus Genetics, there have been a couple of notable updates. The company shared encouraging early safety and efficacy data from the first patient treated in its Phase 1/2 trial for BEST1-associated retinal disease. Just three months after treatment, that patient showed improvement in both visual function and retinal structure. Opus also announced funding for a new trial targeting MERTK-associated retinitis pigmentosa, which will be conducted at the Cleveland Clinic in Abu Dhabi.

In the X-linked retinitis pigmentosa space, Beacon Therapeutics has dosed the first patient in its Phase 2 trial for RPGR-associated X-link RP. Now, this study is specifically looking at the safety and efficacy of dosing both eyes within a short time window. It's enrolling male patients ages 12 to 50 at sites throughout the US.

We also saw an important milestone from SparingVision, which has now completed dosing in its Phase 1/2 trial for retinitis pigmentosa. All 27 treated patients continue to show a favorable safety profile with initial efficacy data anticipated in 2027.

For individuals with Usher syndrome 1B, the company AAVantgarde Bio has completed enrollment of 15 adult participants in its phase 1/2 clinical trial, marking another step forward for this community.

In Stargardt disease, SpliceBio recently dosed the first patient in the dose expansion portion of its phase 1/2 trial for ABCA4-associated disease. While BeLite Bio has announced plans to file a new drug application with the FDA in the second quarter of 2026 for its oral drug tinlarebant to treat adolescents with Stargardt's disease.

Taken together, these updates reflect a rapidly evolving clinical landscape, and it really signals real progress across multiple inherited retinal conditions. With that, I'm now going to turn the program over to Dr. Todd Durham, our Senior Vice President of Clinical and Outcomes Research. Todd?

Dr. Todd Durham, Senior Vice President of Clinical and Outcomes Research

Thank you, Amy. And good morning, everyone. I'm pleased to be here today to provide an update on several important programs funded by the Foundation. We manage My Retina Tracker Registry, which is the largest retinal disease patient database connecting people to relevant clinical trials and natural history studies. Our Registry and related genetic testing program aimed to advance research focused on IRDs while addressing critical barriers to genetic testing and counseling for individuals with IRDs across the United States. Our Registry now has a total of approximately 44,000 participants, including more than 31,000 who have genetic testing information in their profiles. This large cohort of genetically-tested individuals has become increasingly valuable as a source for identified research data that can be used to support clinical trial planning and development, estimate disease prevalence, and increase our understanding of the patient journey and more.

One of the primary ways that members become enrolled in My Retina Tracker Registry is through our genetic testing program. We have a sponsored testing program which allows us to offer genetic testing at no cost to patients through our lab partner, Prevention Genetics, along with the genetic counseling through InformedDNA, who we recommend to interpret the results. This information is provided back to your clinician and to you for further action.

One of the most important benefits of participation in the Registry is to help identify patients who may qualify for a clinical study. This includes our natural history studies, which collect mutation-specific data to help understand disease progression and to enable researchers and therapy developers to identify new, reliable clinical trial endpoints and inform clinical trial designs for emerging IRD therapies.

These studies are coordinated through the Foundation's Clinical Consortium, a network of more than 40 clinical sites with standardized protocols, equipment, and clinical IRD experts. We just held our annual Consortium meeting where our investigators reviewed and discussed preliminary results from our PRO-EYS study, and we shared the next steps for our Regulatory Endpoints and Trial Design for IRDs or REDI Working Group. This group has been developing our research approach to address one of the objectives of a five-year strategic science plan to develop evidence to demonstrate the clinical meaningfulness of novel outcome measures for IRD trials. This project is based on recent FDA guidance on patient-focused drug development and will be a multi-year effort that will leverage the data we are collecting in our natural history studies.

We are currently enrolling participants in our largest natural history study ever called UniRare, which is targeting participants who have 1 of the 300 rare mutated genes that have not been well characterized in the clinic today. There are more than 30 clinical research sites in the U.S., EU, and other countries with the Jaeb Center for Health Research serving as the studies coordinating center.

I'm pleased to report that we recently received funding from Jackie and David Marlin, the Allen B. Cutting Foundation, and an anonymous donor to add to our UniRare study. With this funding, we will include people with the KIZ, or kizuna, gene that causes a form of autosomal recessive retinitis pigmentosa.

Overall, we're very encouraged by the continued progress in learning more about IRD progression through our Registry and natural history studies, and believe these initiatives will have numerous benefits for our community. If you haven't already completed genetic testing to confirm your diagnosis, we encourage you to talk with your retinal specialist about the Foundation's genetic testing program, offering individuals with a clinical diagnosis of an IRD access to high quality genetic testing, genetic counseling, and connection to the Registry at no cost to patients in the U.S.

You can find more information on how to participate in our Registry at myretinatracker.org. Also, you can go to our website, FightingBlindness.org, where we provide a comprehensive list of ongoing IRD-related clinical trials in the research section of our website under clinical trial pipeline.

I will now turn the program over to Anna Wagner, our Senior Vice President of Finance for the financial and corporate sponsorship update.

Anna Wagner, Senior Vice President of Finance:

Thank you, Todd. And good morning everyone. Our Foundation operates on a July through June fiscal year, so we are now almost three quarters of the way through fiscal year 2026. In our budget for this year, we set a goal of $37.9 million in revenue and $24.4 million in operating expenses with a planned net fundraising surplus of $13.5 million to invest back into our mission. For the first eight months ending February 28, we've brought in $18.6 million in unrestricted fundraising revenue. And because of your generosity, $13.5 million has already been put directly into research toward development of treatments and cures for inherited retinal diseases and dry AMD.

One of the things we are especially proud of is how far our reach extends. The work you make possible isn't just national, it's truly global. So far this fiscal year, we have awarded $6.3 million in research grants supporting 24 scientists across six countries. We have also invested $4.2 million in our Clinical Consortium research activities, and nearly half, 46%, of our Consortium sites are outside the US. The global network means discoveries can move faster and reach more people.

Thank you for your generosity and for the trust you place in us. We take that responsibility seriously and we remain deeply committed to targeting strong financial stewardship into meaningful scientific breakthroughs.

The Foundation also receives important support from corporate sponsors, and I want to especially thank the sponsors of our recent and upcoming conferences. As Amy mentioned, we just held our Investing in Cures Summit, where Atsena Therapeutics was our lead sponsor. Coming up in May is our Retinal Therapeutics Innovation Summit, our clinician and researcher-focused conference, where our premier sponsor is Casey Eye Institute and our Innovator Sponsors are AAVantgarde, Alkeus Pharmaceuticals, Atsena Therapeutics, Beacon Therapeutics, BlueRock Therapeutics, Restore Vision, and Sepul Bio by Théa.

Finally, our United in Vision 2026 Conference is made possible through the support of industry leaders committed to advancing the Foundation's mission. Gold partners include Astellas, BlueRock Therapeutics, Genentech, and Sepul Bio by Théa. We greatly appreciate these sponsorships.

There are still some openings for further sponsorships. If you are interested, please reach out to partnerships@FightingBlindness.org for more information. I will now turn the call over to our Chief Strategy and Innovation Officer, Jeff Klaas.

Jeff Klaas, Chief Strategy and Innovation Officer:

Thank you, Anna. Appreciate it. The heart of our mission is connecting our community to drive research towards preventions, treatments, and cures for people affected by blinding diseases. Those connections take many forms, and today I want to highlight some of the best ways to get involved with our great organization.

Our spring VisionWalk season kicks off March 21st in Dallas with 17 total walk events planned across the country. We've also opened registration for our fall 2026 walk events with 14 markets currently scheduled, including an expansion of new and prior VisionWalk markets served. If you're interested in getting involved in an event in your area or starting a new VisionWalk in your community, please reach out to your community manager or email us at info@FightingBlindness.org.

This spring, we're also excited to present our Visionary Award to three incredible recipients at the New York Night for Sight on May 14th. The Visionary Award is the Foundation's highest non-scientific honor, recognizing exemplary values, visionary leadership, and philanthropic impact. To learn more about this year's recipients, visit FightingBlindness.org.

Behind every diagnosis is a family, navigating uncertainty and waiting for treatments that can restore vision and hope. It takes 10 to 15 years and often more than $500 million to bring a therapy from discovery to patients.

The RD Fund, the Foundation's wholly-owned venture arm was built to meet that challenge, deploying philanthropic capital into early-stage biotech companies and recycling financial returns back into the mission.

In just seven years, the RD Fund has grown to more than $130 million under management, investing in 16 portfolio companies, supporting four successful exits, and attracting nearly $1 billion in additional investment from major biotech and venture partners. Today, more than 12 clinical trials have been funded and over 350 patients have been treated in trials and conducted by RD Fund portfolio companies.

We're equally proud of the multiplier effect generated through the RD Fund. The dollars entrusted to us help attract significant follow-on capital, on average, 10 times from other investors. This accelerates the development of treatments far beyond what our funding alone could achieve.

Behind those numbers, our lives already being changed, children seeing their parents' faces for the first time, adults navigating the world with new confidence, and individuals reading letters on an eye chart for the very first time in their lives.

Science is outpacing hope. We don't lack ideas, breakthroughs, or momentum. What we need are partners willing to step forward and help accelerate treatments and cures, and that's why the RD Fund has launched a capital campaign to raise an additional $50 million.

Before I share more, I want to express our deep gratitude to the Gordon & Llura Gund Foundation. 50 years ago, Gordon and Llura Gund helped start the Foundation Fighting Blindness long before treatments were realistic, long before cures were imaginable.

That leadership laid the groundwork for everything happening today, and I'm proud to share that the Gordon & Llura Gund Fund has issued the Gordon & Llura Gund Foundation Match, a $50 million matching gift challenge in which every new or increased qualified commitment to the RD fund will be matched dollar for dollar up to $50 million. When fully earned, this creates $100 million available for deployment, not just incremental funding, it's a game changer in what is possible for the field and for families. Our first rallying milestone is to gain $10 million in commitments within the next 90 day.

This is a once in a lifetime opportunity for our community to make introductions to philanthropists whose gifts will be doubled through the match. If you're interested in learning more about how to participate, please reach out to our chief philanthropy officer, Judy Taylor at JTaylor@FightingBlindness.org.

Together, we can move breakthroughs from possibility to reality and ensure the road ahead is truly paved with opportunity for people living with blinding diseases around the world.

Finally, I want to close with a call to action. Please join us for the United in Vision Conference in Fort Worth, Texas, June 12th and 13th, 2026. This is the first time our biennial VISIONS Conference will be held alongside the Retina International World Congress, bringing our global community together with researchers, clinicians, and industry leaders.

The conference features keynote speaker, Anastasia Pagones, a para-Olympic gold medalist, along with research sessions and an assistive technology exhibit hall. There'll be sessions on mental health, career navigation, legislative advocacy, and daily living strategies. In addition, our disease-specific networking events are designed to connect families on similar journeys.

You can register today at unitedinvision.org to take advantage of a special discounted pricing.

I will wrap up by saying how grateful we are for advocates, participants, and donors like all of you, because none of this progress happens without you. Your generosity, your belief, your partnership are the reasons the Foundation Fighting Blindness and the RD Fund are moving quickly and confidently toward treatments and cures. On that note, I'll turn the program back over to Jason.

Jason Menzo, Chief Executive Officer:

That's great. Thank you so much, Jeff. It's just so exciting to hear all the progress that's happening. And it's a great reminder walking down memory lane and thinking about where we started in 1971 to where we are today and all of the milestones that have been achieved, but there's so much work yet to do.

I really do want to echo what Jeff just said. We are super excited about United in Vision. And just hope that everyone who's on this call today, share it with your friends, share it with your networks. We'd love to have as many people from our community join us this summer in Fort Worth, Texas. It is going to be awesome.

As we've said many times throughout these calls, and really in a lot of the forums that we talk about our work, one of our key messages is that we truly are stronger together. We are stronger together.

And it really captures the power and the progress that we can collectively make as a community, patients, families, volunteers, supporters, industry, all of these different parts of our community coming together across the world.

On that note, we have a very special guest on today's Insights Forum. My friend, Avril Daly, really embodies the rare combination of leadership with deep policy expertise and the lived experience in our inherited retinal disease community.

Avril is a globally respected leader in the retina health and rare disease community. She serves as the CEO of an organization called Retina International. Retina International is an organization I'm personally proud to be involved in - I'm on the board. It is a patient-led umbrella organization that represents charities and foundations focused on advancing retinal research and health policy across more than 40 countries. We're, as an organization, very proud to be one of the core members and founding members of Retina International.

Avril was diagnosed with retinitis pigmentosa as a young woman. She's a powerful and authentic voice for accelerating innovation and improving outcomes for patients worldwide. And you may be wondering, as we're talking about the Foundation Fighting Blindness and Retina International, who does what and what's the nature of the relationship? And what I ask you to think about is really the Foundation Fighting Blindness is the global leader dedicated and focused on driving research and accelerating treatments and cures, development of treatments and cures for inherited retinal diseases and age-related macular degeneration. Whereas Retina International serves as the voice of patient-led volunteer groups and charities and foundations worldwide, encouraging collaboration, shaping international policy and bringing the patient voice forward in many, many different forums. They bring the global lived experience, data, advocacy, strength, and cross-country coordination to life.

We have a shared commitment between Retina International, Foundation Fighting Blindness in a unified patient voice, achieving global regulatory alignment and ensuring equitable access to emerging treatments. Together we amplify the message that progress in retinal diseases depends on collective action - scientific, political, and personal. I'm really excited to turn the call over to Avril to talk a little bit about Retina International and what we have planned for the summer.

Avril Daly, Chief Executive Officer, Retina International:

Thank you so much, Jason. I should carry Jason around, his words, on bad days because that was just a lovely introduction to myself and to our organization. And appreciate the opportunity to speak with you today and all of you on the Insights Forum webinar today.

It's also great to hear from your colleagues, Jason, in Foundation Fighting Blindness and listen to the incredible work that you have been undertaking since 1971 to really be such a global leader in research and innovation. Leaving no stone unturned in order to find the solutions that all of us as patients need to live independent lives. And for those that have worked with you throughout the years and continue to do so, your commitment to all of us doesn't go unnoticed and it really matters and it has impact. And I think it's important to always say that.

Retina International was actually established in 1978, so we're quite middle-aged at this point, catching up at 48 years old. In the '70s, when organizations started to come together to follow the lead of Foundation Fighting Blindness in the United States and also Retina Finland, that also was established in 1971, starting to look into the realities of research and what it could potentially teach us about at that time, retinitis pigmentosa. RI brought groups together every second year from 1978 to learn more about what happened in that period. Remember, this was before the internet. This was before the ability to pick up a phone and ring somebody in a different country without having to go through an operator. So it was really newsletters, et cetera, that was the way in which people communicated for the two years in between those conferences. But in the 1980s, more and more groups started to grow. More and more was learned about research in the context of retinitis pigmentosa, now mostly known as inherited retinal degenerations, and also learning more about age-related macular degeneration and how that affects that particular population.

So we've learned a lot in our early years, but what we've also done is engage and grow our community across all continents. We have, as you say, 41 members who are very active. And they as members are organizations in their own right, many of you on the call today, who you yourselves will have members in your countries and will be working in your countries to develop research strategies for the retina, and also educate and empower your patients to be strong actors in this space. Particularly for us, it's very, very important that we understand the journey of the patient voice in the research perspective from bench to bedside. And that's really important to understand because we know that patients have been involved in conceiving of research with researchers. What do we need to look at? What is going to benefit us?

And then moving through the cycle from bench to translational, understanding that, we now need to understand the natural history. We need to develop interoperable registries that we can utilize to promote better clinical trials that can be designed with patients' needs in mind, understanding how that will make a difference in the regulatory space and then beyond in many countries where regulation and approval at that level is not the end of the story. It is a health technology assessment.

We need to understand the value of our community in all healthcare, and that's something that Retina International does. Our strategy is to innovate, to empower, and to advocate. We innovate through research, and what we do is work with our membership and all of our stakeholders to really develop and generate patient-driven data that will really demonstrate that value.

We empower our community through education and their education courses like our Retina International Education Hub, which really focuses on that bench-to-bedside process. And also our continuous education programs where our membership can bring their learnings to other members within the community.

We share and we learn from each other to ensure that our voice is strong enough to advocate. That's our policy piece so that we understand what are the policy initiatives globally, above country, and regionally and nationally that matter to us. What should we understand? Where does our voice sit? And how can we ensure that we work together with stakeholders to develop policies that are robust, that are meaningful, and that are fit for purpose?

Retina International is slightly different in that sense that it is really focused on research that generates the data to create a strong case for support for our research all through its lifecycle to get access to that research when we go through the regulatory and HTA processes.

It's really important this year that we have an opportunity to come together at the United in Visions Conference in June and share our experience because nothing beats being together, being face-to-face.

What's unique about United in Visions is while we have the VISIONS Conference, and that's been a successful mechanism to bring patients, and clinicians, and stakeholders together for many years in a very positive way to learn more about each other, to learn more about the community. Now we have the addition of a global perspective, and that's really important because a lot of what we want to achieve is exactly the same, but we have to do it in different ways in different countries, and we need to understand that.

We also need to understand how you work closer together and smarter together for our entire community at a global level. And we're very, very excited. I know I'm very excited. I've been to Fort Worth before, and it was a great experience, and I'm very much looking forward to going there again. And of course, as an Irish person, I have cousins in Fort Worth, so I'm looking forward to seeing them too.

I'm really excited, but I'm mostly excited to hear from the speakers. Such a global representation of speakers. We have people coming from all over the world. We have people who will be speaking, coming from Canada, from Ireland, from France, from the UK, from the Netherlands, from Brazil and Australia. There's going to be very many interesting sessions featuring all of those speakers.

We have Dr. Lauren Ayton coming from the Center for Eye Research in Australia, and she will be speaking on Emerging Approaches, and the session will be on advances in artificial retina chip, so that's pretty exciting.

We also have Dr. Erwin van Wijk from Radboud University Medical Center in the Netherlands, and he will be speaking in two sessions. And he will join Lauren to discuss those Emerging Approaches and look at the way science is moving and technology is moving forward in the context of Genetic Technologies as well. So we're very excited about that.

We're also really looking forward to seeing Dr. Mariya Moosajee from the University College London again because Maria has been very, very involved in the Usher syndrome community for a very long time, and she will be discussing her research with us as well.

Lots of others, including Dr. Michel Michaelides and Jo Milne from the UK. We have people representing France, but also our professor, Robert Koenekoop from Canada, who'll also be there and Julliana Sallum from Brazil.

Quite an extensive group of people who will be with us to talk about innovation, and I'm sure you'll be very much looking forward to that. But I want to emphasize as well that apart from the research, we will have great speakers and great panels on mental health, the lived experience, and sharing experience about assistive technologies as has already been mentioned. Really something for us all to look forward to.

You can't beat the opportunity of being together, and the energy of being together brings about more ideas, and we're looking forward to really sharing all of those and maybe creating some exciting opportunities for the future. With that, I'll hand back to you, Jason.

Jason Menzo, Chief Executive Officer:

That was great. Thanks, Avril. I can feel the energy. This is terrific. Thank you for those great words and reminding us about all the wonderful speakers we're going to have from across the globe. And again, can't thank you personally enough for the partnership between the Foundation Fighting Blindness and Retina International.

I just was notified about five minutes ago about something very special I want to share with everyone on this call. We have several hundred people on this call right now. One of which I was just notified is the previously mentioned very special father in many ways to the Foundation Fighting Blindness. Mr. Gordon Gund is actually on the call right now. So hi, Gordon. Thank you so much for joining us. Very excited to have you on this Insights Forum this quarter. Thank you very much for joining us today.

Now, we're going to shift to the Q&A session. We have several questions that have been chatted in. We have an opportunity to have more questions, but I've got about, I don't know, a handful or so that have been chatted in. And what I'm going to do is ask Maddie to just reread the instructions for how to ask questions and then we'll dive into the Q&A. While Maddie's doing that, if I could ask my panelists to come off mute and turn their cameras on and we'll jump into the Q&A.

Maddie Mossman:

Thanks, Jason. There are several methods that you can use to ask questions. You can submit them through the Q&A function at the bottom of your Zoom screen. Please make sure you include your name so that we can follow up with you afterward. You can also send an email to info@FightingBlindness.org, and we'll follow up in the next week.

Jason Menzo, Chief Executive Officer:

That's great. All right, thanks, Maddie. I just have to laugh. So we just had a chat come in from Carol Weigel DiFranco that said, "Hi, Gordon, from the Berman-Gund Lab in Boston." The Berman-Gund Lab, for those who don't know, is the very first IRD lab anywhere in the world. It was actually the origin story of the Foundation Fighting Blindness is the Berman-Gund Lab in Boston. And still today, 50 some years later, great breakthroughs in inherited retinal disease research are happening at the Berman-Gund Lab at Mass Eye and Ear, so pretty special.

Our first question comes from one of my favorite email addresses that I think I've ever seen, texasgrandma14@gmail.com. And I'm going to direct this to you, Todd. This is a question around restoring vision with a technology called optogenetics, and the company that's advancing this particular version of optogenetics is called Nanoscope, and we just wanted an update as to what's happening with Nanoscope. turn it over to you to provide that update.

Dr. Todd Durham, Senior Vice President of Clinical and Outcomes Research

Good morning. This is Todd Durham. The latest from Nanoscope through their various press releases and some published papers is they're developing a synthetic protein that conveys or causes bipolar cells in the retina to become light sensitive. And this particular therapeutic approach is targeted for people who have advanced retinitis pigmentosa where most of their photoreceptors are no longer functioning. This therapeutic approach really bypasses that normal way of collecting light and transmitting that signal to the brain. An important note here about this particular approach and why it's exciting is it would be appropriate for people no matter what is the genetic cause of their retinitis pigmentosa. It also seems to be a very convenient way to receive a treatment with a single injection. The company has reported some very favorable results in terms of restoring best corrected visual acuity and also a multiluminate shape discrimination test, that’s  the ability to detect shapes under different levels of light. It most certainly would be an exciting effect that people with advanced RP would have.

Nanoscope announced a couple of years ago that following a favorable meeting with the FDA, they were submitting their initial data to the FDA for a beginning evaluation. They call it a rolling biologic licensing application, which essentially means the agency, the FDA, has invited them to submit their data early and then continually update it so that can expedite ultimately the final conclusion of their regulatory review of that product. So very exciting. We'll have our fingers crossed about this therapy.

Jason Menzo, Chief Executive Officer:

Great. Thank you, Todd. Next, I'm going to pose two questions to you, Amy, Dr. Laster. One is from Jason Fury, I think that is how you say it, and another from someone named Tracy. Two different questions. One is the latest in clinical trial or research landscape related to choroideremia. And then the other is just generally about cone-rod dystrophy. Tracy and Jason, thank you for your questions, and Amy, I'll turn it over to you.

Dr. Amy Laster, Chief Scientific Officer:

Thank you, and thanks for the question. I'll start with cone-rod dystrophy. With cone-rod dystrophy, as we're hearing over and over, there's no approved treatment. However, there's lots that is happening in the research space. And cone-rod dystrophy, it can be caused by many different genes where you're going to have vision loss that affect both your central and your night or side vision. And so what we are currently seeing for treatments are some gene-specific treatments that benefit individuals with rhodopsin, PDE6A or PDE6B? So having a sense of the genetic cause of your cone-rod dystrophy can be helpful in understanding exactly what research projects or clinical trials are available. But there are, again, clinical trials that are targeting these. I spoke earlier about rhodopsin and Sparing Vision having a essentially gene-agnostic approach in which they're enrolling cone-rod dystrophies into their clinical trial. We do anticipate understanding the outcomes of Sparing Vision’s trial in 2027.

We do have on our website, on our clinical trials pipeline, a list of clinical trials by disease, and that could be a way to stay up-to-date to what's specifically happening across all diseases, but you can always reach out to us at info@FightingBlindness.org as well.

I'll shift over now to choroideremia. With choroideremia, this particular retinal disease, there are a couple of trials in which they have or are enrolling individuals with choroideremia. However, I think the question too was around gene therapy. There had been an early gene therapy trial for choroideremia, and it really was an opportunity for the field to learn about the potential of gene therapy for choroideremia. And so we're seeing a lot of research as well as companies that are iterating on that particular trial and learnings, changing how the replaced gene is inserted into the eye and how to measure success of treatments. So we're keeping an eye on future gene therapy trials for choroideremia.

There are a couple of trials that are enrolling, again, patients, and they're really for more mid or late stage. One company, Kiora Pharmaceuticals, they have a small molecule, it's almost like an optogenetics, but not quite because they're not putting in a protein, but they're putting in a chemical that renders the surrounding retina cells light sensitive. Again, this is more so for a mid-stage vision loss. The other company is an optogenetics therapy, it's Ray Therapeutics. And again, this is when most of your cells are lost, so just as Todd was speaking about Nanoscope, you can render the surrounding surviving cells light sensitive.

Jason Menzo, Chief Executive Officer:

Great. Thank you, Amy. That's terrific. We have a bunch of questions that are coming in fast and furious, so we're going to try to get to as many of them as we can. I do want to remind everyone that on our website, Chris just put it in the chat as well, that we have a clinical trial pipeline, and you can go to FightingBlindness.org and navigate to the section's clinical trial pipeline where everything that is in the clinic is listed. Actually, they're happening so fast that we're trying to keep up with them, but everything that is in clinical trials is listed there with great information about how to connect with a company and things like that. And of course, you can always reach out to us to help navigate that info@FightingBlindness.org.

All right, next. An individual named Polini, I think if I'm saying that right, asked what is included in operating expenses? We know that at the Foundation Fighting Blindness, we're a model nonprofit in the sense that greater than 70% of all of our expenses go to advance our mission and our programs, but there is some expense associated with operating the organization. And so Anna, I'm going to turn that to you.

Anna Wagner, Senior Vice President of Finance:

Thank you, Jason. Our operating expenses are separate from our grant and clinical trial expenses, and they're really the ongoing cost required to run our organization and to deliver our mission. Operating expenses include anything from operating our science department, including operating the RD Fund. There are costs related to our public health and education initiatives, all of our conferences, all of the costs that are for our supporting departments such as finance and IT and all of our fundraising activities. And for anyone interested to learn more about our financials, a copy of our 990 and our audited financials are also available on our website, FightingBlindness.org, and they are in the About section under Financials.

Jason Menzo, Chief Executive Officer:

That's great. That's perfect. Thank you very much, Anna. We've got only just another two minutes. I'm going to take the last couple questions myself. Our friend, Eric Bernardo, in Pittsburgh, asked if there's an update on the whole eye transplant project. We won't be able to provide a deep update here in this call right this second because it'll take way longer than two minutes, but I do want to share with everyone that the Foundation Funding Blindness is involved with the University of Colorado and many other academic institutions across the country in advancing a project within the Advanced Research Projects Agency for Health, ARPA-H, a program within the federal government. And through ARPA-H, we're advancing a project around total eye transplantation. And there's a couple milestones coming up later this month and another really big milestone this fall, and we'll be reporting out those milestones as they occur. So thanks for the question, Eric.

Several questions about a company called Ocugen. Again, we probably don't have time here to discuss it, but there's a lot of information on our website. We'll get with Eric and the others that asked about Ocugen specifically. Anyone who we don't get to answer their question here on the call will always reach out to you directly to provide answers. So we'll reach out to you guys about Ocugen.

And then Laverne Street asked, and she gave us this great story here in the chat that her son recently found out that he has retinitis pigmentosa, and he's 22 years old. And he was always told from his eye doctors when he was a child and a young teenager, that his symptoms were somewhat dismissed and they thought to be associated with a high prescription.

And what the point of Laverne's comments are that perhaps there's something in our natural history studies or something that we can look at clinically about the early clinical signs before the traditional signals of RP like trouble seeing at night or peripheral vision loss, and things like flashing lights and floaters, which I have also anecdotally heard from several folks that those early signals of RP that might be a little bit disconnected from what you typically think of as a classic RP case. So there might be something there. We'll look at it with our Clinical Consortium.

I do see, Robin, the question about is research for the MAK gene. Yes, we'll get with you offline, so don't worry, we will follow up with you. And again, thank you to everyone for joining us on today's call. It is 12:00 here. I will say one final thing.

Rosie asked what kind of specialist for an individual with Usher syndrome? And we have a great section on our website. Again, we can get with you offline to make a recommendation of a great inherited retinal disease specialist, one of our 40 Clinical Consortium sites that are located across the globe. If you reach out to us at info@FightingBlindness.org, we can make a recommendation on a great clinical site depending on where you live. With that, let me turn it back over to Maddie to close out the call.

Maddie Mossman:

Thank you, Jason. We'd like to thank everyone for participating in today's call. As a reminder, there will be a transcript and audio recording of today's call within the next week on our website, www.FightingBlindness.org. And also, be sure to follow us on Facebook, Twitter, LinkedIn, Instagram, TikTok, and Threads to stay informed on the latest news and activities from the Foundation. You can like and share the Foundation posts on your own social media channels to help spread the word throughout the month. If there is any other information you need, please reach out to us by sending an email to info@FightingBlindness.org. Thank you all so much and have a great day.