Insights Forum

Recording Available: Foundation Insights Forum – November 30, 2023

Wednesday, December 6th, 2023, 1:54 p.m. – 1:54 p.m.

The Foundation Fighting Blindness is pleased to provide a recording and full transcript of the Insights Forum, our quarterly conference call providing updates to the inherited retinal disease community. The call took place on November 30, 2023.
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Foundation Fighting Blindness
Insights Forum Transcript
November 30, 2023

Amanda Bement, Chapter Engagement Assistant:

Hello everyone and thank you for joining today’s Insights Forum. Before we get started, I would like to briefly review a few details for this 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, so if you would prefer to prevent the controls from auto hiding, you can use the following keyboard shortcuts to toggle the always show leading controls option. If you are using Window commands, press the alt key and if you are using a Mac keyboard, you can press command and backslash at the same time. Today’s presentation is being recorded and is available with closed captioning.

To activate the closed captioning, please select the three dots located at the bottom right of the Zoom window, select captions, and then show captions. 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’ll be able to ask questions via the Q and A feature and the chat feature, both of which are 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 or so. 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.

Jason Menzo, Chief Executive Officer:

Well thank you so much Amanda, and good morning, good afternoon, good evening to everyone, depending on where around the globe you’re dialing in from today. Thank you so much for joining us today. My name is Jason Menzo. I am the Chief Executive Officer here at the Foundation Fighting Blindness. I’m here in Raleigh, North Carolina, but on the screen today we’ve got colleagues from all across the country here in the United States, many different time zones, and we’re really excited to share so many updates of what’s happening here at the Foundation Fighting Blindness and in the broader ophthalmic and inherited retinal disease community. Really excited to welcome you to our quarterly Insights Forum webcast. As you know, we use this forum to provide updates on strategic initiatives here at the Foundation Fighting Blindness, and also to share research and development progress from across the broader inherited retinal disease and age-related macular degeneration research communities.

We have a very exciting call today. The agenda is as follows. First, my colleague Chris Adams, who’s our Vice President of Marketing here at the Foundation, will share some highlights of our current marketing and engagement initiatives from across the community. Then Peter Ginsberg, who’s our Chief Operating Officer, will highlight a few notable corporate partnerships and developments in that arena and review our current fiscal year 2024 financial performance through the end of the first quarter. And then I will return to provide a few updates on several of our key strategic initiatives here at the Foundation. And then finally, we’re going to conclude our prepared remarks today with two very exciting guest speakers. First, Dr. Rusty Kelley, who’s the Managing Director of the Retinal Degeneration Fund, or as we call it the RD Fund. He’s going to provide an update and overview how effective the RD Fund has been at driving our field forward, including highlighting a few recent investments.

And then to wrap up our formal program today, I’m very excited to welcome prominent clinician and researcher Dr. Gregory Hageman, who serves as the Professor of Ophthalmology and Visual Sciences at the University of Utah’s John A. Moran Eye Center, and as Executive Director of Moran’s Steele Center for Translational Medicine. Dr. Hageman will speak about his groundbreaking research with Perceive Biotherapeutics on age-related macular degeneration, which we call AMD and specifically, geographic atrophy, or GA.

And then as we always do, following our formal remarks, we will open the call for your questions and in addition to the speakers that I’ve mentioned on the call for the Q and A session, we’ll also be joined by our Chief Scientific Officer, Dr. Claire Gelfman, Dr. Amy Laster, who’s our Senior Vice President of Science Strategy and Awards. And with that, I’d like to turn the call over to Chris Adams, our Vice President of Marketing and Communications.

Chris Adams, Vice President, Marketing & Communications:

Thank you, Jason. I’m excited to share with you a summary of many outreach engagement initiatives our team has been working on. In October, we recognized Blindness Awareness Month with a full lineup of activities throughout the month. We continued the Share Your Vision campaign this year after a successful launch last year. We incorporated the leading line, “My vision Is …” so community members could finish the phrase - some included their personal vision updates, while others talked about what they hope for the future. This year, we also worked with a select group of community influencers to create original content, which was available on our social media channels, including Facebook, Instagram, and TikTok. This year we had dozens of original stories submitted for the campaign, reached over 1.7 million people around the world and had over 665,000 engagements with our posts, which includes likes, shares, comments, and reposts.

To drive awareness for the Foundation and the work we do we also developed a new Public Service Announcement campaign, or PSA campaign, which just launched a few weeks ago. The message for this year’s campaign focused on breaking the stereotype of what being blind or having low vision looks like. The campaign features a variety of individuals from our community and consists of television and radio commercials, along with print and digital advertising. PSA campaigns can be very impactful in spreading awareness about the Foundation. Our past two PSA campaigns received over 1.4 billion impressions. That’s right, billion with a B, which equates to more than $31 million in free media advertising for the Foundation. The latest PSA commercial can be found on our homepage for your viewing. This video includes both closed captioning and audio description, which audibly describes all the images on the screen. We produced our PSAs with best in class accessibility features.

Another way we can expand the awareness and reach of the Foundation is through partnerships. Last month we acknowledged and announced a collaboration with Eone on the launch of their ChangeMaker tactile watch. The watch features two ball bearings that circle the watch’s face, indicating the hours and minutes so users can tell time using touch or sight. The ChangeMaker is a limited edition watch that comes in a slate blue color that ties to the Foundation’s brand color and values of trust, unity, and importance. A portion of the sales will be donated to the Foundation so it’s stylish, practical, and provides increased funds for research. If you’re interested in purchasing one of these special watches, please visit Eone-changemaker.com. Don’t worry, we’ll put that address in the chat. This fall brought many events to our communities, including chapter activities, VisionWalks, golf events, and dinners being held throughout the United States. We hosted 13 walks in communities across the country, raising over $1.3 million with 20 more planned in the spring of 2024. I’m pleased to report that in fiscal year 2023, VisionWalk registration numbers were up 25% compared to last year with more than 10,000 participants. To learn more about our VisionWalk program, visit visionwalk.org.

We also leveraged the power of our community network through other types of local fundraising events this year, such as two recent golf tournaments in October, the Fountain Cup at Wedgewood Pines Country Club in Stow, Massachusetts, and the 35th annual Atlanta Golf Classic at TPC Sawgrass in Jacksonville, Florida. These events raised several hundred thousand dollars for the Foundation, due in part to the support of dedicated local leaders such as Foundation trustees, Scott Selby, Michael Lynn, Mark Curley, and Meredith Tyree.

To see what events are planned in your community, please visit the Foundation website at fightingblindness.org and select the Foundation Events tab in the upper right corner. From there, select View All Events to see everything that’s going on in your community. If you have a chapter in your area, you can also see the upcoming activities on the specific chapter page. To find out more about our chapters, please visit fightingblindness.org/chapters.

And also a quick reminder, mark your calendar to attend Visions 2024, the Foundation’s global conference being held June 21st and 22nd next year at the Chicago Marriott Downtown Magnificent Mile. The conference provides an excellent opportunity to connect with others from the blind and low vision community and learn about the latest research advancements, products and services for members of our community. Registration is now open, so please visit our website to find out more information and sign up for the Visions 2024 Conference. We look forward to seeing you there.

And finally, we would like to thank everyone who contributed to this year’s Giving Tuesday campaign. Tens of thousands of dollars came in to support the Foundation’s mission. Those gifts went even further due to the generosity of a match from a few dedicated donors and partners, including Two Blind Brothers.

I’m now pleased to turn the program over to Peter Ginsberg, our Chief Operating Officer. Peter.

Peter Ginsberg, Chief Operating Officer:

Thanks Chris. I’d like to begin our funding and financial summary today by recognizing one of our new corporate sponsors providing critical support for important Foundation initiatives. Rhythm Pharmaceuticals is focused on patients living with diseases such as Bardet-Biedl syndrome, or BBS. BBS is often diagnosed in childhood and is an inherited disease that can cause progressive loss of sight and loss of night and peripheral vision, as well as severe obesity. Rhythm’s first product called IMCIVREE has been approved by regulators in the US, UK, and Europe for chronic weight management in adult and pediatric patients with related genetic deficiencies.

It’s excellent to have Rhythm on board as a new Outreach and My Retina Tracker Registry partner, especially as we continue to rapidly grow our Registry membership through the funding of genetic testing for individuals affected by inherited retinal diseases or IRDs.

Now moving on to our financial update. We completed our fiscal 2023 on June 30th and our audited statements are now available on our website in the About Us section under Financial Reporting. For fiscal 2023, our net unrestricted fundraising revenue was $32.0 million and operating expenses were $17.2 million, yielding a net fundraising surplus of $14.8 million, which exceeded our expectations. The combination of that surplus with funds previously committed means that the Foundation was able to spend more than $27 million on research and public health education in 2023.

In fiscal 24 we’re targeting $34.5 million in unrestricted revenue against $21.1 million in operating expenses for $13.4 million in net fundraising surplus. For the first quarter of fiscal 2024 that ended on September 30th, our unrestricted revenue was $8.0 million versus expenses of $4.4 million for a net fundraising surplus of $3.6 million. And so far we’re ahead of budget for the year. We’re coming to the end of the calendar year, so our typical strong donation season lies ahead.

There are also several recent corporate developments from three of our RD Fund portfolio companies that I’d like to highlight for you.

Atsena Therapeutics dosed the first patient in its Phase ½ clinical trial for its X-linked Retinoschisis or XLRS gene therapy. The clinical trial is evaluating the gene therapy in male patients with XLRS caused by mutations in the gene RS1.

Also, Opus Genetics dosed the first patient in its Phase ½ gene therapy clinical trial for Leber congenital amaurosis 5, otherwise known as LCA5, which is an early onset retinal degeneration for which there are no approved treatments. Encouraging data from the first two patients in this trial were presented at the American Academy of Ophthalmology conference earlier this month.

Also, SparingVision announced positive initial safety data from the Phase ½ clinical trial of its lead mutation-agnostic gene therapy for the treatment of retinitis pigmentosa. That gene therapy was reported to be well-tolerated in the first low dose cohort with a favorable safety profile.

Also, Fierce Biotech named SparingVision as one of its 2023 ‘Fierce 15’ biotech companies, which designates it as one of the most innovative and promising companies in the industry. So at the Foundation we’re quite encouraged with all the clinical progress within our RD Fund portfolio companies as well as other companies in the field.

Another important development in ophthalmic research comes from a new partnership that the Foundation announced with Verana Health®. We’re very excited about this new partnership. Through it, the Foundation will combine de-identify genomic and patient reported data from our My Retina Tracker Registry with electronic health record data from the American Academy of Ophthalmology IRIS® Registry to support biopharma company research focused on patients with IRDs. The key research applications for the combined dataset include clinical trial design insights, health economics and outcomes research, and patient and site selection for clinical trials. We’re quite optimistic about this opportunity to help biopharma companies find faster paths to bringing their treatments to affected individuals.

I’d like to wrap up my remarks by highlighting a recent event that the Foundation hosted as part of our professional outreach initiatives. Our professional outreach team is focused on educating eyecare professionals about retinal diseases and the Foundation’s resources that provide knowledge, community and hope to patients and families. In early October, we hosted a webinar focused on therapeutic targets for dry AMD, featuring the remarks by Dr. David Boyer, who’s a thought leader in the field of age-related macular degeneration. Dr. Boyer discussed the diagnosis of dry AMD in patients, and he also reviewed existing and developmental treatments for the disease. We’re grateful for Dr. Boyer’s participation and for the sponsorship provided by Apellis Pharmaceuticals to help make this scientific webinar possible. And if you’d like to hear a recording of the webinar, it’s available on our website under the Professional Outreach Webinars section.

On that note, I’ll end my comments by expressing our appreciation for all of the support from our donors, sponsors and Foundation partners who make it possible to continue to drive the research that leads to treatments and cures for inherited retinal diseases and dry AMD. And now I’m happy to turn the call over to our CEO Jason Menzo. Jason.

Jason Menzo, Chief Executive Officer:

Thank you so much Peter, and again, thank you to everyone for joining us today. I get such a kick in these calls seeing all of the different chats from across the country and across the globe. Today’s no exception. We’ve had folks saying hello from Europe and South America and Mexico, and even a few from Detroit, Michigan, my hometown. It’s always such a pleasure to see all of the different folks dialing into these calls from really across the globe. To shift into this section of today’s call, we’re at the end of the year and as is always the case this time of year, there’s so much going on that we want to update you on, both in the broader eye research community, but also as it relates to specific initiatives that drive our mission here at the Foundation specifically. I’m going to start with a few highlights from several international medical meetings that have taken place over the last couple of weeks.

First off was a really important meeting that took place last month in Spain. It was the 20th International Symposium on Retinal Degenerations. This is a highly respected biannual meeting and is the largest retinal degeneration focused medical meeting anywhere in the world. The symposium was established back in 1984 and this year’s event had the highest attendance in the history of the event with more than 350 researchers from across the globe participating. And one of the most notable presentations that I took away from this event was given by Dr. Jason Commander, who’s someone that we work really closely with from Mass Eye and Ear. He reported on a project that the Foundation sponsored at Mass Eye and Ear to reanalyze the original clinical trial from the early nineties/late eighties that was the foundation of the claim that taking vitamin A supplements would slow down the progression of vision loss associated with retinitis pigmentosa.

And what Dr. Commander and his team did is they reanalyzed that original data from that original study using new methodology and new technology, and their conclusion was really important and something I want to share with you today. Their conclusion after re-analyzing the original data was that taking vitamin A supplementation for patients with RP in fact is not effective at slowing the vision loss related to retinitis pigmentosa as it was originally reported. But don’t worry, there was a lot of really good information that came out of the study. The study showed that using new technology that can understand genetic cause and electrocardiogram results can help predict the course of disease for different segments of patients with retinitis pigmentosa and a lot of other data that came out of this re-analysis will be helpful for developing future therapeutic clinical trials which measure the progression rates associated with disease.

We’ve got a terrific detailed writeup on the summary of this paper and this presentation. And if you’d like additional information, we’re going to put a link in the chat that will take you directly to our website for the summary article that we wrote that analyzed this report.

Also at the RD 2023 meeting in Spain, there was a separate presentation from another researcher that we worked really closely with, Dr. Kapil Bharti, from the National Eye Institute. He reviewed the preclinical data supporting the evaluation of the diabetic drug, metformin in a new National Institute of Health sponsored clinical trial analyzing its use in Stargardt disease. This was really promising and really encouraging and may support the future evaluation of this commonly available drug for use in Stargardt disease.

Also of great interest at the conference where research presentations by many members of the Foundation-funded labs across the globe. They were aimed at identifying the root cause of retinal degenerations, including the role of lipids and oxidative stress as well as different disease models to test potential future therapies.

So it was a terrific meeting and one that I was very proud to see how much the work of the Foundation is driving and influencing the progression of accomplishing our mission of bringing forth more treatments and cures for inherited retinal disease and dry AMD.

Next was the American Academy of Ophthalmology annual meeting, which was just a few weeks later, in early November in San Francisco. And this meeting is always a really important meeting for the Foundation because it features the latest developments across the entire field of ophthalmology. And this year was no exception. There were terrific presentations specific to inherited retinal disease that I want to talk about.

One of the presentations was from Kiora Pharmaceuticals who is developing a novel small molecule therapy, which we refer to as a “photoswitch”, which is injected into the eye. They presented some early but meaningful data showing in a clinical study that vision restoration was accomplished for several RP patients with advanced vision loss.

This is an example of what we call a gene agnostic approach. This is irrespective of the specific gene or the specific mutation. Importantly, it’s targeting patients that have later stage disease with the aim of not just halting but actually restoring vision. So this “photoswitch”, again, it’s early clinical data, but the data was encouraging with a few patients showing vision restoration even though they had advanced vision loss. The Foundation provided significant funding to UC Berkeley through one of our award programs, our Translational Research Acceleration Program to develop what has eventually led to this potential treatment.

Another key presentation at the AAO, or American Academy of Ophthalmology, came from Alkeus Pharmaceuticals in which Dr. Christine Kay, who we work really closely with as well, she shared positive data from Alkeus’s TEASE-1 clinical trial for Stargardt disease in individuals that have mutations in the ABCA4 gene.

Again, this is really encouraging and for everyone on the call today, I just want to reiterate, as we say all the time, there really is so much momentum of potential treatments moving from the laboratory and into the clinic. And these are just a handful of examples of really tangible results that we’re seeing in the clinical trials. And these are just a few, there are dozens more and all the information about all the clinical trials that are ongoing across the globe for the whole spectrum of inherited retinal diseases can be found on our website in our Clinical Trial Pipeline, which we’ll put in the chat in a few minutes as well.

Finally, I want to reference another important initiative that took place a couple of months ago in September. Our Foundation team partnered with the U.S. FDA, the Food and Drug Administration, and the National Eye Institute on a workshop focused on developing patient reported outcomes and a vision related quality of life questionnaire.

The purpose of this workshop was to identify future steps in the development of tools to support clinical research and potentially could lead to new endpoints for a variety of ocular conditions and varying degrees of visual impairment, which as we know will be really important as more and more potential treatments move into the clinic and that the sponsors are looking for new ways to assess the efficacy of their treatments.

Much of the recent progress that we’re talking about here in our field has come from research that was previously funded directly from the Foundation Fighting Blindness. And as I’ve said so many times, we’re now on the cusp of this next chapter in really driving the research into the future. How we work at the Foundation is on a five-year cycle. And we don’t talk about this all that often, but I want to take a minute to explain how the strategies that are deployed in the market to drive the research forward get organized and operationalized.

So every five years, the Foundation Fighting Blindness gets together with the world’s experts, 60 of them from across the globe, to assess what’s the current landscape and what are the gaps in six specific priority areas that are covering the span of the inherited retinal disease and dry age-related macular degeneration marketplace. We then publish a scientific strategic plan which identifies the gaps and the milestones that are required to further the mission. This takes place once every five years. We’re currently in the last year of our current five-year strategic plan, which we launched in the year 2020, and it’ll extend through fiscal year 2024. We’re working with our scientific advisory board today to launch the next strategic plan, which will go into effect July 1st, 2024, and expand to, believe it or not, fiscal 2029. It’s a little bit of a mind bend to think about the year 2029, but that’s the work we’re doing today to prepare the scientific strategic plan that’ll extend through fiscal year 2029.

There are multiple steps underway in the process. Currently, our Scientific Advisory Board is reviewing the achievements in the field over the last five years, identifying key knowledge gaps to inform the Foundation’s research priorities. And rest assured that we plan to publish a summary of these findings and do so in a lay-friendly language. So it’s not going to be super technical. There will be a technical paper. There will also be a lay-friendly paper so everyone can digest the information and understand where is the fields today, what are the gaps and milestones that we want to drive into the near future, and ultimately what are we hoping to achieve in the next five years? We’ll share the highlights of all of that on one of our future Insights Forums calls. In addition, our science and finance staff are working to work through all of the programmatic strategies and budget allocations that are required to support this plan. As you could expect, it’s a very expensive endeavor for us to continue to drive the field forward. It takes tens of millions of dollars, tens of tens of tens of tens of millions of dollars to continue to drive this field. We do expect that this plan that we’re going to put forward for the next five years will be the most aggressive and robust plan ever put forth by the Foundation in terms of the resources that we’re going to be allocating to drive the field forward. The culmination of this entire process will come next year, and we will officially roll out the next five-year strategic plan come July 1st, 2024. So stay tuned.

As I just mentioned, to fund this ambitious plan, it requires a lot of resources to make it all come to life. Our management team and our board of directors spent some time over this past year stepping back and assessing how could we best set the organization up to achieve the aggressive growth plans that’ll be required to fund the research that we’re talking about.

We determined that a near term priority was to create a new role within the Foundation’s leadership team, exclusively focused on developing new strategies and innovations around our fundraising. And so to that end, yesterday, I was thrilled to announce that Jeff Klaas has officially joined the Foundation team in a newly created role we’re titling Chief of Strategy & Innovation. Jeff is a terrific guy and I’m really excited to have him join us not only at the Foundation, but actually on one of these Insights Forum calls, probably the next one, so you can all get to meet him as well. He’s a seasoned healthcare and technology non-for-profit leader. He’s got entrepreneurial spirit, which fits really well with what we’re trying to do at the Foundation and a commitment to leveraging technology and innovation to drive social impact and revenue growth. His experience and philosophy aligns seamlessly with the Foundation’s mission and importantly, my vision for the future of where we’re going with the organization.

He has a distinguished career that spans for 25 years in senior roles with broad ranging experiences across multiple industries and public companies, non-for-profit organizations alike. Most recently, Jeff served as the executive vice president and chief digital officer with the American Cancer Society, where he led multiple teams contributing over $700 million in annual revenue to their mission. As our Chief of Strategy & Innovation, he’s going to be overseeing the departments and leading the next chapter of our development, chapters, engagement, events, and marketing communications teams. I’m very confident that Jeff will be instrumental in steering the Foundation towards strategies, innovations, and partnerships that’ll drive impact for our community. And noteworthy, he has a personal connection to our mission. I’ll let him tell that story in detail on our next Insights Forum call.

Finally, one of the ways that we will expand our reach and impact from the perspective of everything we want to do over the next five years is by further engaging a broader global audience. We’ve talked about this on these Insight Forum calls as well, and I mentioned it just even earlier today in my remarks, how we’re continually touching and engaging with a broad global community. In 2023 alone, we awarded nearly a hundred grants to 96 investigators in 25 different countries, and now it’s time to expand our funding to mirror our research priorities, which means we need to think even more about how to engage the global inherited retinal disease community.

We’ve established a detailed and phased approach to increasing engagement and fundraising support from stakeholders outside the United States, which includes establishing our first international chapter in the UK, specifically in London, and meeting with other eye focused research foundations outside the United States to establish new relationships and opportunities for collaboration. We want to do everything in a collaborative spirit because all of these different vision research organizations have the same goal, and we want to be really good partners to help accelerate us achieving our goals on a global basis.

As part of this new initiative, we recently hosted our first World Retina Day International Webinar, highlighting the researchers that we fund from across the globe. This event drew a large audience of more than 500 participants from 45 countries, from Argentina to Australia and everywhere in between, including Bhutan, Finland, South Africa, Thailand, to name a few. It was like the Olympics parade of countries. It was really awesome to have folks from across the globe engaged in that webinar. We really do believe that now is the right time to strategically invest in more international engagement and we have the right team, a strong plan, and the market is set up for us all to work together to achieve success to drive the global IRD community.

The final topic I want to talk about today is another critical strategic initiative here at the Foundation. We’ve discussed it quite a few times on these Insights Forum calls. In 2018, we launched the Retinal Degeneration Fund, also known as the RD Fund, as the venture arm of the Foundation.

As we’ve discussed in the past, the RD Fund focuses on mission related investments in companies with projects nearing clinical stage of development. The creation of the RD Fund was part of our strategy to adapt to a rapidly changing environment with many academic research projects ready for translation into the clinic and eventually commercialization. And as you all know, running clinical trials is very expensive, it’s very complicated and in order to spread out the investment and risk, the RD Fund approach is based on leveraging our funding with other investment firms and strategic partners that allows us to accelerate more opportunities than we could fund on our own. I’m thrilled to be able to have on our call today my friend and colleague, Dr. Rusty Kelley, who’s the Managing Director of the RD Fund. In his role, Rusty leads all efforts related to the Fund and is making tremendous impact on our mission.

He brings over 25 years of experience in identifying and developing life science technologies and has a strong scientific and financial background with expertise in clinical development and venture funding. He’s been instrumental in driving the RD Fund to new heights and bringing many more potential treatments and cures to our community. And today he’s going to give a snapshot of the Fund’s portfolio and highlight three specific new investments that we’ve made this year.

And then after Rusty, as I mentioned at the outset of this call, we’re honored to have our special external guest speaker, Dr. Greg Hageman, who will provide an update on his cutting-edge research on age-related macular degeneration, which is the basis for one of our new RD Fund portfolio investments. Rusty and Greg, I’ll turn the call over to you.

Dr. Rusty Kelley, Managing Director of the Retinal Degeneration Fund

Thank you Jason. And thanks for the opportunity to provide this global audience with a brief update on several RD Fund activities, including to highlight several companies we’ve recently added to the Fund’s portfolio. As Jason described, the RD Fund serves as a key role in leveraging donor dollars to fuel companies with innovative technologies who are making achievements in the field. In simple terms, the RD Fund uses a venture philanthropy model that brings to bear financial resources, very importantly, the resources of the Foundation and to surround ourselves with like-minded investment firms to select and support promising companies.

Venture philanthropy is a type of impact investment that takes concepts and techniques from venture capital finance and business management and applies them to achieving philanthropic goals. In our case, via mission-related investments that aim to provide both clinical and financial returns to the Foundation. This approach leverages the wealth of knowledge from the Foundation, its global relationships and resources, including the Foundation’s Clinical Consortium, the Foundation’s My Retina Tracker Registry, and our Scientific Advisory Board alongside outside funding from co-investment partners.

Let me share with you a few points on how the fund works. We focus primarily on companies with programs that are in clinical testing or can be in the clinic in less than 24 months. We use a variety of investment strategies including equity, convertible debt, royalties, and or project-based co-funding. Our initial investment allocation typically ranges between $2 - 5 million with appropriate reserves to provide each company additional funding as needed. All proceeds that the RD Fund receives back over time from these investments are returned to the Foundation to provide resources to further its mission. For example, the Fund receives funds back when a portfolio company is sold or successfully becomes a publicly traded company.

The RD Fund has an independent board consisting of 11 directors who bring significant scientific, clinical and financial expertise, and we are very fortunate to have a seasoned ophthalmology leader, Dr. Adrienne Graves, serving as our board chair.

Over the past five years, the RD Fund has raised over $121 million in committed funds from a group of generous philanthropists including anchor donations from the Gund and Manning Family Foundations. Today, the fund has deployed $78 million across 14 investments in companies thus far in the U.S. and in Europe. These companies are working on a range of promising technologies and therapeutic targets, including gene therapy, RNA therapeutics, neuroprotection, and optogenetics. These companies include: Amber Bio, Atsena Therapeutics, CheckedUp, Nacuity, Nayan Therapeutics, NVasc, Opus Genetics, Perceive Biotherapeutics, ProQR, SalioGen, SparingVision, Stargazer Pharmaceuticals, Vedere Bio, and Vedere Bio II.

The RD Fund continues to partner with a growing and impressive list of more than 45 top-tier venture firms and strategic partners, such as Atlas Venture, Deerfield, Abingworth, Hatteras Venture Partners, Paul B. Manning Capital and Johnson & Johnson.

And this is a very key point to Jason Menzo’s earlier statement around the cost of therapeutic development. We absolutely need these top tier, deep pocketed firms to support those pivotal trials. To date outside investors have committed over $700 million towards the fund portfolio companies. This outside capital represents well over eightfold additional investment dollars alongside the RD Fund. Today I’d like to briefly highlight our three most recent investments, Amber Bio, NVasc and Perceive Bio.

Amber Bio is developing a first of its kind RNA editing platform to replace larger regions of gene transcripts, therefore expanding the treatable range of disease-causing variance with a single treatment. Amber Bio is first applying its technologies towards inherited retinal diseases that arise from a diverse set of mutations. Amber is currently optimizing its splice editors and their delivery to the retina for developing highly efficient RNA replacement strategies.

One of the key RD Fund strategies is to diversify our portfolio to include candidate therapeutics for dry AMD and geographic atrophy. There have been major advancements in this area with two products approved just in the last year. However, there remains a significant need for alternative approaches to treating this blinding disease, and thus the RD Fund has made two recent investments in this area of dry AMD.

One of these investments is NVasc, a company developing a therapeutic angiogenesis strategy for the treatment of retinal ischemia associated with the continuum of age-related macular degeneration. NVasc was founded by a team of highly regarded scientists: Dr. Napoleone Ferrara, the late Nobel Laureate Dr. Robert Grubbs, Dr. Dan Schwartz, and Dr. Marco Zarbin. Dr. Ferrara was involved in the discovery of VEGF, which led to the development of LUCENTIS® and AVASTIN®.  These are widely used treatments across several disease areas, including as the standard of care for treating wet AMD.

The Nvasc founders have been working to develop a mechanism using a large molecule to prevent the loss of the blood supply and the expansion of atrophic regions for the treatment of dry AMD and geographic atrophy. NVasc is currently conducting nonclinical testing of its product candidates.

The other dry AMD investment that I mentioned we made in the last fiscal year is with Perceive Biotherapeutics. Perceive is a clinically staged company developing novel treatments, leading with a gene therapy candidate for dry AMD and geographic atrophy. The company’s emerging gene therapy, which relates to risk alleles for dry AMD and geographic atrophy identified by our next guest speaker, Dr. Greg Hageman, targets regulation of the complement system, a part of the innate immune system that is over reactive when an individual has dry AMD. The company is also developing novel therapies in neuroprotection which may be applied in glaucoma and retinitis pigmentosa.

As you can tell from these recent investments, there are many exciting approaches to treating IRDs and AMD. Today we are honored to have one of the leading AMD scientists join us to share his perspective on the current AMD landscape. Dr. Greg Hageman is a Professor of Ophthalmology and Visual Sciences at the University of Utah’s John A. Moran Eye Center. He serves as the Executive Director of Moran’s Steele Center for Translational Medicine. He serves as the executive director of Moran’s Steele Center for Translational Medicine. As an extension of that work, Dr. Hagen has been involved in the advancement of the scientific work of Perceive Bio where he serves as Chief Science Officer. During 30 years of research, he has received numerous industry awards including the Foundation’s Trustee Award. It’s been a great pleasure working with Greg and his teams at the University of Utah and Perceive Bio.

But now I’d like to turn the program over to Greg for his comments. Greg, thank you for joining us, and the floor is yours.

Greg Hageman, PhD, Professor of Ophthalmology and Visual Sciences, University of Utah John A. Moran Eye Center

Thank you, Rusty, and hello to everyone out there on the internet. It’s my real pleasure to be here today and certainly a privilege to have the opportunity to work with Foundation Fighting Blindness and the RD Fund. Just a note to the audience, you may not be aware that FFB is very actively supporting programs in age-related macular degeneration in addition to their longstanding activities related to inherited retinal degeneration. What I’d like to do in the next few minutes is provide an overview of age-related macular degeneration and our efforts to develop therapies to slow the disease or stop the disease completely.

The term age-related refers to the fact that individuals with this disease certainly manifest disease typically over the age of 60. Macular degeneration refers to the fact that the disease primarily affects a region of the retina called the macula. The macula is responsible for a lot of your fine acuity vision, your ability to see color, and it’s that region that’s predilected towards degeneration in this disease.

We typically talk about stages of macular degeneration. I like to think about it as having early stages where vision loss is limited, but quite often, and unfortunately, those early stages often progress to two forms of late-stage disease. One of those, I think you’re probably familiar with, degeneration caused by the growth of new blood vessels in the back of the eye, we refer to that as neovascular disease. The second major form of late stage disease is referred to as geographic atrophy where there’s a degeneration of the macula without this ensuing growth of new blood vessels.

We started in the field about 35 years ago. I had a grandmother with macular degeneration and changed my career path. We started early on using donated human donor eyes to try to understand what was happening in the back of the eye in individuals with macular degeneration. And those studies taught us that the complement system, which is a very important component of your immune system, was not functioning appropriately at the level of what we call the retinal pigmented epithelium, or RPE, which is a very important layer of the retina itself.

Those observations of complement led in the year 2000 to the discovery of the first major gene that is associated with macular degeneration. That gene sits on Chromosome one and encodes a protein called Complement factor H, and Complement factor H, is a very important protein in regulating the activity of the complement system. So about five years later, that discovery was followed by the discovery of a second major gene that sits on Chromosome 10 and that gene is referred to as the ARMS2 HtrA1 complex. I think very surprisingly these two genetic loci accounts for approximately 95% of all risk for developing macular degeneration.

And that really gave us a lot of hope that we could take that knowledge of two major genes and push towards the development of therapeutics. I’ll also point out that those two genes drive very different biologies. Both genes affect primarily the retinal pigmented epithelium. And so macular degeneration at the end of the day is really two very different biological diseases.

So a number of years ago, we really had a good handle on our understanding of the biology of Chromosome one or Complement factor H directed disease, and we really wanted to push towards the development of therapeutics. The question in my mind at the time was how best to use our knowledge of the biology to hasten the development of therapeutics. And the tact we took, I moved to the University of Utah, John Moran Eye Center, and we developed what’s called the Steele Center for Translational Medicine.

The concept of that center was to develop large scientific and clinical teams to interact with a whole cadre of worldwide collaborators. We built resources that we thought were important towards understanding the disease. For example, a large repository comprised of 12,000 pairs of donated human eyes and patient cohorts comprised of about 60,000 individuals. And we felt at the time that it was really important to have a corporate partner that worked with us to translate the biology into therapeutics, and that corporate partner became Perceive Biotherapeutics, as Rusty mentioned. I’m thrilled to tell all of you in the audience that the FFB RD Fund recently partnered with Perceive to help drive forward the development of therapeutics, particularly for Chromosome one directed macular degenerations.

So a few comments about our therapeutic development program. I told you that individuals that carry the risk form of Complement factor H is associated with a poor regulation of complement activation at the level of the RPE. And this results in dysfunction of the RPE and eventually it’s death, resulting again in the development of geographic atrophy. What I didn’t tell you is back in about 2005, we discovered that there are highly protective forms of the Complement factor H (CFH) gene. And put another way, if you carry two copies of protection at this locus, your odds of developing macular degeneration are very, very small. So protection in the protective form of factor H is very powerful, and it only seemed prudent to us that we should think about providing back protective CFH to individuals who carry risk at the CFH locus. We call this an augmentation strategy. The idea is, again, to provide back that protective form. We think this is a better strategy than inhibiting the complement system, as it’s so very important in cases of things like infection.

The therapy we’ve developed currently is a modified form of protective CFH. We’re developing that protective gene as a gene therapy, so a single injection, the concept being that the protective gene is packaged into a virus. The virus is injected into the eye, infects various retinal cells. The gene and the protective gene is released and hopefully made for some number of years. Also pleased to announce that the FDA recently approved Perceive to move forward with a clinical trial using this particular gene therapy. And the Phase ½ clinical trial is currently in progress. Thanks to all of you for listening. A heartfelt thanks to FFB and the RD Fund. You have done so much good for so many people, so thank you very much.

Jason Menzo, Chief Executive Officer:

Thank you so much Dr. Hageman, and thank you to everyone for joining the call today and for the significant engagement, both in the chat as well as through the Q and A. As is always the case, we’ve got way more questions than we have time, but rest assured, as we always do, every single question that gets chatted in or asked in the Q and A section or emailed, we follow up with every single person. Whether or not we get to it on the call or not, we will follow up with you individually if we don’t address your question on the call. With that, it’s time to open it up.

It is 10 minutes before the top of the hour. I’m going to take the blame. I think I went long in my comments today, which pushed us a little bit closer to the top of the hour than we normally would be. We’ll go a little bit longer than we normally do today to make sure we can address a good number of questions. So today’s call may go till maybe 10 minutes past noon here on the East Coast in the United States. But with that, let me turn it back over to Amanda to briefly review how to ask questions and then we’ll jump right in. And I request all of my colleagues to come back into the room and be prepared for the Q and A session.

Amanda Bement, Chapter Engagement Assistant:

Thanks Jason. There are several methods that you can use to ask questions. You can submit them through the Q and A or chat function, both are at the bottom of your Zoom screen. And again, make sure you include your name so that we can follow up afterwards. You can also send an email to info@fightingblindness.org, and we’ll follow up in the coming weeks. And we did send out a lot of links today in the chat, so we’ll make sure that those are available later as well.

Jason Menzo, Chief Executive Officer:

All right, very good. Thanks, Amanda. So our first question comes from Shilpa Arora, and Shilpa asks, “My daughter, who is two and a half years old, was diagnosed with LCA5.” Peter referenced LCA5 in his comments. I’m going to ask Rusty, could you give the group a brief update on the status of the clinical trial that’s ongoing right now with Opus Genetics for LCA5?

Dr. Rusty Kelley, Managing Director of the Retinal Degeneration Fund (11:35 am)

Thank you for your question. We’re excited, and I think the LCA5 constituent base that we’ve become close to over the last couple of years is thrilled to know that we have a live LCA5 clinical trial with Opus Genetics. And since your child is younger, pediatric, I think the prospect of LCA5 being applied to pediatrics in this Phase ½ clinical trial is very probable. The early data for this LCA5 trial is preliminary but encouraging, and that’s as we always do in a Phase ½ trial, start with the more diseased cohort at a lower dose. But as things are proven out, safety and efficacy, the goal would be to move this into a pediatric cohort. I think we’re very encouraged by the early preliminary data.

Jason Menzo, Chief Executive Officer:

Thanks, Rusty. And I would address not just to Shilpa, but there were many questions around where to find information around these clinical trials that are ongoing. I know I mentioned in my comments that at this moment there are clinical trials, both gene specific, gene agnostic, different strategies and modalities across the spectrum of retinitis pigmentosa, Stargardt, Usher Syndrome, LCA, as we just were discussing, AMD, so on and so forth. And all that information about every single clinical trial that is ongoing in our space right now is available on our website at the Clinical Trial Pipeline. And Chris, maybe we could put the link in the chat directly to that page so folks can easily find the listing of all 40 clinical trials that are ongoing in our space.

Our next question comes from Keisha Lambert in Dickinson, Texas. A couple of questions here. One, we’ll address offline Keisha, but the two related to RPGR and what’s happening with regards to clinical trial potential in that arena, and also how beneficial are low vision specialists for individuals with RP? Going to ask Claire Gelfman, our Chief Scientific Officer, to address those two questions.

Dr. Claire Gelfman, Chief Scientific Officer:

Hi, thank you Jason. This is Claire Gelfman. With respect to the X-linked RP question, there are actually two clinical trials in later stage. So Phase 2/3 - one comes from Beacon Therapeutics, and perhaps Amanda, you could put a link to that company and the other one I’m about to mention in the chat for our participants. The Beacon study is planning their Vista trial, this is their Phase 3 study. It is a gene therapy, so it’s gene augmentation, giving back a good copy of the gene that’s otherwise mutated and is giving back the gene that will make the protein that is not functioning properly, that’s causing photoreceptors to malfunction and compromising vision. The other company that’s in Phase 2/3, that’s going to be starting their study a little bit later. This is MeiraGTx. Meira’s program is actually in Phase 3. Beacon’s Vista study is due to start very soon. We will post updates from both of those on our website.

But in the meantime, it’s important that individuals who have been diagnosed with an inherited retinal disease work with a low vision specialist in order to maintain and maximize your independence. Low vision clinics all over the U.S. are trained to do just that, to provide you with techniques to allow you to do as much as you can with your remaining sight, but also prepare for any vision loss so that you will not be caught off-guard. I really encourage you, number one, to keep track of the trials through our website, through communications, through the Foundation, but also to work closely with a low vision specialist to really learn ways to maintain your independence and then prepare for any vision loss that may ensue.

Jason Menzo, Chief Executive Officer:

Thank you, Claire. Our next question comes from Joyce. And Joyce chatted in a question. She’s coming to us from Barcel, Lebanon, which speaks to the global nature of these calls. And we spoke about it in my section, I talked about the fact that there was this new research presented in Spain last month around re-analyzing the clinical data that led to the recommendation of vitamin A for certain patients with RP. And that data has now been re-analyzed. And I want to have Amy specifically talk a little bit further about the Jason Commander study. Not only did Joyce ask a question about taking vitamin A, but Sherry Rogers and many other folks in the chat have asked, “Wait a minute, this is a change. What’s the full story here?” Amy, you can talk about that.

Dr. Amy Laster, Senior Vice President of Science Strategy and Awards:

Thank you, Jason. Again, this is Amy Laster. I just want to follow on from what Jason said regarding the updated vitamin A study to say that patients should always, always consult with your physicians about changing any treatment or supplement regimen. Dr. Commander, when giving the overview in Spain, he did advise that RP patients that have been on the vitamin A supplement for many, many years and you feel like you’re doing really great can continue the regimen under their doctor’s supervision of getting an annual liver test. So again, I just want to reiterate, talk to your physician about your supplementation and whether you should discontinue or to continue this particular vitamin A supplementation. And for those who want more detail about this study and the outcomes, we do have this posted on our website’s homepage.

Jason Menzo, Chief Executive Officer:

That’s good, and thanks Amy. And I think we also put in the chat a link directly to that summary, which is good. We’re using the chat for this purpose, but as we’ve said multiple times in this call, any question you have, you can always just email us directly at info@fightingblindness.org at any time, and we can get back to you a specific information including links to resources like this and things of that nature. I’m going to go to a few questions about specific genes. I’m going to direct this to you, Rusty. We said over and over again that the 40 clinical trials happening in our space are on our websites so you can dig into specifics, but there are some that have not yet actually moved into the clinic, but are maybe close. And two of those that might be good examples of that are CRB1 and NMAT1. I’m going to ask Rusty, you’re really familiar with programs in both of those arenas. Maybe you could speak to the current status for CRB and NMAT-1.

Dr. Rusty Kelley, Managing Director of the Retinal Degeneration Fund

Always happy to report progress, and I think we were fortunate in that these two genes, CRB1 and NMAT-1, are being pursued biologically and therapeutically by several investigators that the Foundation has supported over the years. One of them is Jan Windhausen, Leiden University in Holland, and then Jeremy Kay at Duke University. Both have published seminal work on the biology of CRB1 and the pathophysiology of CRB1. And then NMAT1, in the same light as CRB1, has been well-supported by the Foundation, in this case through Eric Pierce’s lab at Mass Eye and Ear as part of the Harvard University hospital system. And in NMAT1, like CRB1, there are early childhood onset cohorts of that disease, but there is some heterogeneity. And so I think the objective, as we discussed with LCA5 and Shilpa, is to be able to address both adults, young adults and pediatrics. I think the promise for both of these candidate genes as gene therapies or therapeutics to address those variants is promising.

Jason Menzo, Chief Executive Officer:

Thank you so much Rusty. We had a couple of questions specifically around EYS gene, and this is going to be a little unusual so I’m going to ask our business person to address them. But Peter, you’re really in tune to the natural history studies that we’re supporting, particularly the natural history study around EYS. Maybe you can update the group on that.

Peter Ginsberg, Chief Operating Officer:

Sure. Jason, and this is Peter Ginsburg. We do have a very important natural history study ongoing in patients affected by mutations in the EYS gene. The study is called Pro-EYS and it began in 2019. It’s a fully enrolled natural history study with just over a hundred affected individuals. And right now there’s a four-year follow-up. These individuals are followed for a full four years after being enrolled. And we’re nearing the halfway point in that follow-up period. And the initial publications from the Pro-EYS studies have been coming out. In fact, there were a few at the ARVO conference this past spring.

The importance of these natural history studies is to spur future clinical trials in patients affected by these mutations because with the natural history study data in hand, a research group or company is much more likely to want to study that group of patients because we will understand the characteristics and the progression characteristics of that patient group. We are optimistic that the Pro-EYS study will ultimately result in clinical trials in this field. While there are no EYS specific clinical trials ongoing, there are gene agnostic clinical trials ongoing that can be found on our clinical trials’ pipeline that could be beneficial for EYS patients.

Jason Menzo, Chief Executive Officer:

Great. Thank you Peter. Dr. Hageman, we had a question from Thomas Walston, which I think is a really good question. And Thomas, you chatted this in, but many others may be wondering the same thing on today’s call. We had Dr. Hageman speaking about some of the advancements in dry age-related macular degeneration, and I think Greg even referenced the fact that many times people think of the Foundation Fighting Blindness exclusively as focused on inherited retinal disease. And while that, in some ways we are the undisputed global leader in that arena, but we’re also very involved and have been actually since the nineties in funding research for AMD, and what I’m wanting you to maybe speak to is how research in something like dry age-related macular degeneration can unlock new potential strategies that could affect other macular conditions like Stargardt or other inherited retinal diseases.

Greg Hageman, PhD, Professor of Ophthalmology and Visual Sciences, University of Utah John A. Moran Eye Center

Happy to do that. I think first, one observation is that we know that pathways like the Complement pathway are very much involved in some of the inherited retinal degeneration, Stargardt’s being a good example. The possibility that the therapies we’re developing actually could be used for some of these IRDs. I think importantly too, the prevalence of these two genes that I talked about today are so high in the population that one of the questions we’re actively pursuing is that if you carry risk at Chromosome one or 10, does that exacerbate some of the inherited retinal degenerations? That work is ongoing and hopefully in a few years we’ll be able to tell you much more about that.

Jason Menzo, Chief Executive Officer:

That’s great. Thank you. And again, thank you Thomas for the question. Claire, today we’ve had, I can’t even count how many questions specifically about is there any work ongoing in gene A or in gene B or in gene C? And sometimes the answer is yes, and you can speak to that and other times the answer may be no, not yet. But one of the things that we’re continually funding in driving forward are what we call gene agnostic approaches, meaning that if a strategy in a gene agnostic arena is successful, it would potentially have positive impact regardless of what the gene or the specific mutation that is affecting the patient. And maybe you could speak just for a few minutes for those that we’re not going to speak to with regards to the specific genes, maybe you can speak to why gene agnostic approaches are so important.

Dr. Claire Gelfman, Chief Scientific Officer:

Yeah, thanks Jason. This is Claire Gelfman. For the reasons you just mentioned Jason, even with genetic testing getting better and better, an individual who gets genetic testing does not always receive a report with a specific genetic cause for their clinical diagnosis of an IRD, and that can be quite frustrating. But to your point, there are also a lot of therapies in development that can help restore function to a dying photoreceptor regardless of one’s genetic cause of that photoreceptor degeneration. And one of the reasons why the Foundation Fighting Blindness funds a lot of work to learn about photoreceptor function is that we can bypass the genetic defect, if you will, learn about what really constitutes a functional photoreceptor and then fund work to restore function to those dying cells regardless of the genetic cause. And in fact, we’ve learned that things like oxidative stress, for example, really exacerbates photoreceptor disease regardless of one’s mutation.

And that’s why you hear us talk a lot about, for example, Nacuity and SparingVision. These are companies that are working on these mutation agnostic approaches to restore or at least prevent further degeneration of a dying photoreceptor. In the case of SparingVision, their current program, their lead program is neuroprotective and that it will hopefully prevent further degeneration or further vision loss. And the same with Nacuity. This is another neuroprotective effect that can prevent further degeneration, further vision loss. But there’s also, you’ve heard us talk a lot about optogenetics, which is also a gene agnostic approach targeted for later stage disease that has the ability to bypass a dying photoreceptor and restore vision to a part of the retina that is not degenerating even though a person has an IRD. So there are a lot of therapies being developed to restore or at least prevent further progression to those regardless of one’s known genetic cause. And we will continue to provide updates on those programs.

Jason Menzo, Chief Executive Officer:

Thank you, Claire. And Peter, remind me, I think when we did an analysis of our prior five years of funding, or maybe it was even longer, that the funding that we’re putting behind gene specific approaches and gene agnostic approaches, correct me if I’m wrong, Peter, it was about 50/50, is that right?

Peter Ginsberg, Chief Operating Officer:

That’s correct, Jason.

Jason Menzo, Chief Executive Officer:

We’re trying to be diversified in advancing multiple shots on goal across different strategies. It’s almost 10 after 12 here on the East Coast of the United States. We’ve got maybe one or two more questions. I really appreciate everyone hanging on and engaging with us today. Obviously these calls could go for hours and hours to cover every question, but we try to cover as many as we can on the call. And then as I’ve said, we will follow up with anyone whose question we didn’t get to. And at any time you could shoot an email to us at info@fightingblindness.org or connect with us on Twitter, LinkedIn, Facebook. We’re on TikTok now and all these great places. So you can engage with us and ask us questions through any of those different means as well. Oh, Instagram. Forgot about that one. Question for you, Amy. There was a request to provide an update on the status of the National Eye Institute’s NAC Attack clinical trial and also CHM. So maybe you could speak to those two.

Dr. Amy Laster, Senior Vice President of Science Strategy and Awards:

Yeah, thanks Jason. Amy Laster again. Johns Hopkins is the initiator of the NAC Attack trial. They’re currently recruiting for their Phase 3 arm of this trial for an oral version of N-acetylcysteine, which is NAC, in patients with RP. This study is taking a look at whether taking NAC long-term can slow the progression of vision loss with a person with RP. This is a gene agnostic approach, just as we just talked about. It’s a strong antioxidant, as Claire just mentioned in her comments, that is already FDA approved for acetaminophen overdose. That trial is underway in a Phase 3.

The other approach, I want to circle back, Jason mentioned in his comments about the company Kiora, that has a small molecule called a photoswitch to restore vision in people with later stage retinal degeneration. Kiora has also recently announced that they are planning to develop it not just for RP patients, but also for choroideremia patients. In addition to another clinically staged company called 4DMT, which is designing a gene augmentation to replace the REP1 gene for choroideremia, we anticipate on the horizon is another clinical trial using Kiora’s novel small molecule. Again, another gene agnostic approach. Thanks, Jason.

Jason Menzo, Chief Executive Officer:

Very good, thanks Amy. As we wrap up today, I actually just want to share a question, but a little bit more about this question. We had something sent in from a gentleman named James Flynn from Ottawa, Canada, Eastern Ontario in Canada. And the reason I wanted to highlight this particular question, because it is reminiscent of so many of the stories that we hear from people within our community, and I think that many people on the call today probably can share a story similar to this. James wrote in about his son who’s 33 years old, and when he was six was diagnosed as having retinitis pigmentosa. At the time, they didn’t know much more about what to advise the family to do other than to learn braille and to prepare to lose their sight. The doctor was not aware of any retinitis pigmentosa research or clinical trials.

And unfortunately, this is what we hear often from our community and hopefully everyone on the call today realizes that that’s absolutely not the case. There’s so much that’s happening. And one of the challenges that we have is how do we educate the eyecare professionals so that when an individual is diagnosed, the story and the message that they’re left with is one of hope and optimism and activation - that there’s a lot that you can do. Number one, get involved in an organization like the Foundation Fighting Blindness, but also become aware of the clinical trials that are ongoing. Number one, get genetically tested today. Unlike maybe a few decades ago, we know that there are over 300 different genes that are known to cause inherited retinal diseases. And here in the United States, the Foundation Fighting Blindness through our My Retina Tracker genetic testing program will offer free genetic testing and free genetic counseling to decipher the information from the genetic test, for anyone in the United States and many countries across the globe have similar programs, either through their state funded programs or otherwise.

But it’s really important, number one, to get genetically tested and try to identify if there is a known gene mutation that is causing the condition. And then also certainly to get involved. Get involved in a chapter, get involved in learning about what’s happening within the clinical trials. If for example, as this question goes on, if it’s a mutation, particular mutations in RPE65, there’s a treatment available in many countries across the globe today, a gene therapy from a company called Spark and Novartis outside the United States, but it’s called LUXTURNA. That’s a gene therapy available for those individuals if it’s an RPGR mutation or some of these others that have clinical trials ongoing. There’s so many different things that are on the horizon, but it all starts with educating yourself, which I’m proud of everyone on this call today for taking the time to educate yourself, but there’s so much more than we had a few decades ago where today there are dozens of clinical trials ongoing and more on the horizon.

So I want to leave everyone with that. And as we wrap up today, I do want to just reiterate our sincere appreciation for participating today, for your ongoing support. Truly as a leader in the space, we can only do what we do in driving the research to provide preventions, treatments and cures for inherited retinal disease and dry AMD with the support of you all. Everything that we do is donor driven, and every dollar that we put to work to drive this research and bring forth more treatments and cures is all thanks to the generosity of our donors and folks like yourself. We certainly welcome your feedback and suggestions related to this webcast or anything that we do. And as I’ve mentioned a few times before, you can always reach us at info@fightingblindness.org and learn more at our website fightinglindness.org. I’m going to turn the call over now to Chris Adams to wrap up.

Chris Adams, Vice President, Marketing & Communications:

Thanks, Jason. We’d like to thank everyone again for joining today’s call. And as a reminder, we will have a transcript and audio recording of today’s call available next week and on our website, fightingblindness.org. And also, as Jason mentioned, be sure to follow us on Facebook, Twitter, LinkedIn, Instagram and TikTok 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. If there’s any information you need at any time, please reach out to us by sending an email to info@fightingblindness.org. Thank you and have a great day.