It’s been extremely interesting learning about Foundation Fighting Blindness and fantastic to hear Jason speak was such open enthusiasm about inclusion. We are so pleased to be able to share the great work and achievements of the organization with our community. Thank you to Jason and all the team at the Foundation for the work you do and impact you have on so many lives. It’s been great to highlight an organization that embraces inclusion so completely and leads by example in their inclusion journey.
Community Spotlight: Jason Menzo, CEO, Foundation fighting Blindness
Here at Eone, supporting and highlighting the work of non-profit organizations that improve the lives of individuals with vision loss has always been an important part of what we do. So, we were delighted that Jason Menzo, CEO of Foundation Fighting Blindness generously took the time to chat with us about the work of the Foundation and how inclusion plays a vital part in what they do.
After more than 20 years working in the biotech and pharmaceutical side of ophthalmology, Jason was in search of an opportunity to apply his experience in a more purposeful way. At the same time, Foundation Fighting Blindness was looking to shift the direction of the organization, having just appointed Dr. Ben Yerxa as CEO. The mission, the leader and the timing all fit together beautifully, and Jason joined Foundation Fighting Blindness as COO in early 2018, and subsequently was appointed as CEO in July 2022.
Foundation Fighting Blindness
Since its establishment in 1971, the Foundation has been driving research into prevention, treatments and cures for hereditary retinal diseases that cause blindness. In the last 40 years, incredible progress has been made and much more is known about conditions such as Retinitis Pigmentosa, Usher syndrome, Stargardt disease and Leber congenital amaurosis (LCA), but more work, and therefore funding and support is needed.
Jason joined the organization with a goal of finding ways to accelerate the research from laboratories, into clinical trials and eventually to the market. Historically, the foundation funded laboratory-based research but had no vehicle to continue to support and drive research beyond that phase, when it would enter a private biotech firm for clinical trials. In 2018, the Foundation set up a venture fund, the ‘RD Fund’ allowing them to invest in private companies working on the most promising treatments. This means the Foundation can continue to support, drive and influence research further along the process, staying up to date with the progress of the most innovative technologies being developed.
A global mission
Blinding retinal conditions affect more than 10 million Americans and millions more throughout the world. Jason understands the global nature of their mission and his approach to finding solutions is therefore a global one too.
“We view ourselves as a global organization. We fund research and engage with constituents all over the world. We view our constituents as tens of millions of people, because our mission is broader than the individuals that are affected by these inherited retinal diseases. There are family members, those who are passionate about advancing treatments and the whole community involved. So, in my mind, anyone who can relate to this mission, should be part of this journey with us.”
The geographical location and nature of the research institution, whether the research is conducted in a laboratory, a university, a hospital or in a private company, is all secondary to the research itself. “We just want to fund the best work to find treatments and cures. it doesn’t matter where the science is, it matters that it is good science.” Indeed, as well as funding projects in the United States, the Foundation funding extends internationally to laboratories in Australia, Belgium, Brazil, Canada, Denmark, England, Finland, France, Germany, Israel, Italy, Mexico, the Netherlands, Poland, and Switzerland, amongst others. With the introduction of the RD Fund, the Foundation now also supports research by private companies around the world.
Choice
Foundation Fighting Blindness was founded with the primary mission to fund and drive research into blinding retinal diseases and continues to be the world’s leading organization of this kind. However, it was interesting to hear Jason talk about how research is not their only goal and how inclusion fits into the work of the Foundation. They recognize that not everyone who is blind or visually impaired is seeking treatment for their condition, and that how someone feels about their blindness is unique and deeply personal. They don’t presume their work brings hope to everyone who is blind, but rather, choice. The treatments that become available as a result of the Foundation’s work will give individuals the right to choose how they live.
“At the end of the day, our goal is to support a community to live their best lives, regardless of the challenges they might be affected by.” Jason spoke with energy and enthusiasm as he shared his vision. “I dream of a day where someone who is affected by a blinding disease has options, and if they choose to pursue a genetic treatment that maybe we sponsored or funded, then that’s available. However, if they choose not to, then they should be ensured a fully accessible and inclusive environment in which they can participate and support the community in any way they want. Just because we are the world’s leading organization in driving research into cures and treatments for blinding diseases, it doesn’t mean we can’t also be a leader in driving inclusion into our communities and society.”
AIDE
We were interested to hear Jason describe how inclusion is cultivated at the Foundation.
“Everything we do has the aim of having best in class accessibility built in. Our website is fully accessible, our events are fully accessible. But it’s more than that. It’s being a vocal leader in terms of advocacy. One of our core values is ‘AIDE’ which stands for Accessibility, Inclusion, Diversity and Equity. DEI is a really important movement that’s happening around the world right now, but we feel that it’s missing the ‘A’, which is accessibility, so we created this acronym, AIDE and it’s embedded into everything we do.”
The Foundation has business and organizational goals related to AIDE, with teams responsible for ensuring the tangible and measurable goals are not just met, but woven into every aspect of the Foundation’s ethos.
“Greater than 10% of our workforce is either personally affected or has a family member affected by a blinding disease. And of course, there are many other disabilities that people are affected by every single day. We take it very seriously that our workforce reflects the community, so all different folks from a talent and abilities point of view, work for the organization. Further, it’s not just our employees, we are very intentional about the diversity of our Board. Currently, around 50% of our Board is personally affected by a blinding disease. The only way you can understand the needs of a group of people, is if they are part of the conversation. So, the leadership, the Board and the staff of our organization reflect the community.”
Partnering with Eone
We are delighted to announce that Eone is partnering with Foundation Fighting Blindness on the upcoming ‘ChangeMakers’ campaign. Together, we will host a celebratory event where we will recognize ten ‘ChangeMakers’, incredible individuals who have worked tirelessly to positively impact our collective inclusion journey. We will launch a new, limited edition timepiece, also called the ChangeMaker in celebration of all the many ChangeMakers out there. A portion of the sales of each of these timepieces will go to the Foundation to help further their fantastic work.
“We are thrilled to be partnering with a leader in inclusive design because inclusion is a priority for us,” Jason explained. “We love that Eone has a global community of ChangeMakers and thought leaders in the blind and low vision community and that we are able to partner with them and raise the profile of what the Foundation is aiming to do with the community and vice-versa.”
To get to know an organization who values inclusion as much as we do is always a pleasure. It’s even more exciting when we have an opportunity to work together to increase the impact of our message. Find out more about the ChangeMaker event here.
One more thing Jason, What is inclusion to you?
“Every single person has unique characteristics and unique needs. There shouldn’t be any barriers for an individual to participate fully in any activity they choose. Inclusion is free choice for every individual to participate however, wherever they choose.”