Podcasts about stargardt

Associate Professor Anai González Cordero joins us on Shirtloads to explore the remarkable world of stem cells and how they can develop into almost any cell in the human body! She explains how her team is using stem cell technology to better understand and develop potential treatments for inherited retinal diseases, including Stargardt disease and Usher syndrome. We also discuss her work at the Children's Medical Research Institute and the importance of supporting genetic research through Jeans for Genes Day (coming up on the 7th of August!) If you'd like to help fund life-changing genetic research, consider making a donation this Jeans for Genes Day www.cmrijeansforgenes.org.au/

We love to hear from our listeners. Send us a message.Episode 134 of Cell & Gene: The Podcast features Host Erin Harris' discussion with Shannon Boye, PhD, Founder and CSO of Atsena Therapeutics. Dr. Boye shares how the company is approaching Stargardt disease with a differentiated gene therapy strategy built around delivery, dual-vector design, and a disciplined go/no-go framework. Their conversation also explores what Atsena's broader clinical experience is teaching the team as it advances new programs and works toward the clinic.Subscribe to the podcast!Apple  |  Spotify |  YouTubeVisit my website: Cell & GeneConnect with me on LinkedIn

This week, Rob, Steve, and Lis sit down with Tom Perski, a pioneer in low vision rehabilitation and assistive technology whose lived experience has shaped services for thousands of people with vision loss. Diagnosed with Stargardt's Disease at 19, He shares candidly about dropping out of college, grief, denial, and the long journey back through rehab, assistive technology, and ultimately a career helping others navigate the same path. We also dive into Tom's new memoir, “There's No Vision Like Low Vision,” which chronicles his journey and offers a hopeful, honest roadmap for anyone facing vision loss or any major life change. If you or someone you know is newly diagnosed with vision loss, this is an episode you won't want to miss. Show Transcript https://atbanter.wordpress.com/wp-content/uploads/2026/07/podcast-episode-462-tom-perski.pdf Show Notes There's No Vision Like Low Vision on Amazon https://www.amazon.ca/Theres-Vision-Like-Low-Degeneration/dp/1998315487 AT Banter is brought to you by Canadian Assistive Technology, providing sales and training in Assistive Technology and Accessibility with over 30 years of knowledge and experience. Visit them online at www.canasstech.com or call toll-free 1-844-795-8324 or visit their Assistive Technology Showroom at 106 – 828 West 8th Avenue, Vancouver. Need repairs on your device? Chaos Technical Services offers service and support on almost any piece of Assistive Technology, while also providing parts and batteries. Visit them online at www.chaostechnicalservices.com or call 778-847-6840.

This week, Wes and Todd talk with Chloé Duplessis! Chloé discusses her family, her education, growing up in Shreveport, Louisiana, living in New Orleans, moving back home, running for the school board, her involvement in politics, getting her diagnosis of Stargardt disease, moving to Denver, starting her art business, telling lesser known stories of history, working in different mediums, honoring her ancestors and our shared history, travel, being part of a supportive art community, creating the first accessible “I Voted” sticker for the City of Denver, the Colorado Black Equity Study, Cathay Williams, the history behind & the evolution of her exhibition “12 Tablecloths, burlap being her “soul fabric,” her exhibition “Origin Story” at Understudy, her piece “Reclaiming Liberty,” and her advice to Artists to “Serve from where you are.”Join us for a fantastic and inspirational conversation with Chloé Duplessis! Check out Chloe's work at www.chloeduplessis.com Follow Chloé on social media:Instagram - www.instagram.com/duplessis.art/ - @duplessis.art Chloé's exhibition “Origin Story” will be on display at Understudy through July 19th - https://www.denvertheatredistrict.com/understudy Hear Chloé talk about the exhibition “Origin Story” on YouTube - https://www.youtube.com/watch?v=4dNjq1pv9P0 Chloe's exhibition “Shared History” opens July 28th at the Center for Colorado Women's History - http://www.historycolorado.org/center-colorado-womens-history Check out Chloé's other shows happening later this year at www.chloeduplessis.com/eventsSend us Fan MailFollow us on Instagram:@tenetpodcast - www.instagram.com/tenetpodcast/@wesbrn - www.instagram.com/wesbrn/@toddpiersonphotography - www.instagram.com/toddpiersonphotography/ Follow us on Facebook:www.facebook.com/TenetPodcast/Email us at todd@toddpierson.com If you enjoyed this episode or any of our previous episodes, please consider taking  a moment and leaving us a review on your favorite podcast platform.Thanks for listening! 

Belite Bio submits new drug application to FDA for its Stargardt treatment by Foundation Fighting Blindness

What if VR looked beyond traditional employment pathways? In this episode of Manager Minute, Carol Pankow sits down with Kristy Schenderlein, Vice President of Operations at the Blind Institute of Technology (BIT), to discuss how an RSA Disability Innovation Fund (DIF) demonstration grant is redefining career opportunities for people with disabilities. Learn how BIT combines accessible technical training, industry-recognized certifications, registered apprenticeships, and employer partnerships to prepare participants for careers in Salesforce, digital accessibility, AI, and project management. With participants earning family-sustaining wages and advancing into six-figure careers, this conversation challenges VR professionals to think differently about workforce development and the future of competitive integrated employment. Listen Here   Full Transcript: {Music} Kristy: Organizations are unfortunately trying to fit our community into a little box. What they think we can do, not what we know that we're capable of. You guys are really forging ahead with something that's never been done before. And so how do we get the VR groups, the VR counselors and teams to break out of what their traditional mold has been? Our participants earn an average of 75,000, and within three years of employment, the majority have been promoted and are making over six figures. Intro voice: Manager minute, brought to you by the Vocational Rehabilitation Technical Assistance Center. Conversations powered by VR. One manager at a time, one minute at a time. Here is your host, Carol Pankow. Carol: Welcome to the Manager Minute. Joining me in the studio today is Kristy Schenderlein, VP of operations at the Blind Institute of Technology. So Kristy, how are things going for you? Kristy: Very good. Ready for summer to start. Carol: Yes. It's starting here in a big way, let me tell you. We've got heat wave going on in Minnesota. So today we're going to talk about a Disability Innovation Fund project focused on expanding access to careers and technology for individuals with disabilities. And this is a space getting a lot of attention right now. But what does it actually look like to build something that works in practice? So let's dig in. So Kristy, let's start with your journey. How did you get connected to this work and to BIT? Kristy: Yeah, absolutely. So I myself am a member of the Blind and visually impaired community. I have Stargardt's disease, which is a juvenile form of macular degeneration. So I navigated through the education space as a visually impaired student, got my degree from University of Wyoming and Communications a long time ago. We don't want to talk about how long ago that was, but then I moved into a career as a litigation paralegal for about 15 years. And my husband and I opened our own hardware store, where, in addition to being a small business owner and doing whatever was needed of me that day, I also oversaw all of the operations there as well. And when we closed our store, I kind of was at a crossroads. I wasn't sure exactly what I wanted to do, except for the fact that I really wanted to look into the potential of working with employment in my community. Through my years, I had met with apprehension. Can I do the job? Shock? You know, some people would see, you know, especially when we were at the hardware store and I began using a cane in the middle of us owning the store. So, you know, people would walk in and I'd be standing there with my cane. And if I asked them, you know what I can help them with? Or if they'd see me, you know, talking to employees found out I was one of the owners. You know, I was just met with disbelief that I could actually be doing this job. You know, sometimes it was just blatant. No, you can't met with a I don't see how this can be done. So I'm not going to open my mind to even consider this. So I know that navigating those waters of employment for not only people within the blind and visually impaired community, but pan disability community as well, is difficult. And I know that it is not the lack of ability, it's the lack of opportunity. And so what could I do to help my community? And an acquaintance introduced me to Mike Hess, our executive director. Mike and I met. He told me about BIT, BIT's mission, his vision, and I jumped on board seven years ago. When I jumped on the ride, there was five of us, now there's almost over 50 of us, the majority of which identify with some form of disability, including in leadership. So we're really proud of that. It's been a wild ride for sure. Carol: I think it's really cool. I was looking a lot. I was looking you up. Of course, you know, I got to check out your story on LinkedIn and all the things as well. And then just perusing the BIT website and such. And I just think you have a really amazing cast of folks that are working there. Kristy: We do. Carol: And I really like what you're doing. Kristy: Thank you. Carol: And I could not believe, actually, since I found out about you, I had contacted like my folks back at State services for the Blind in Minnesota. I'm like, do you guys know about them? Like, because I sure didn't know about you when I was there. And I just think getting the word out more is super important. So I know you and I had spoken earlier and we were talking about your DEF grant application and that you guys actually had a model that you had built. And so you were basing this application on that. Can you talk a little bit about the different process and what problem you were trying to solve with your application for the project? Kristy: Yeah, absolutely. We know the numbers and how ugly they are that, you know, 70% of people with disabilities are either un or underemployed for the BVI community. It's even higher. It's at 80. I think those numbers have changed a little bit, but unfortunately that needle hasn't moved much in years. There's a lot of organizations out there that are saying that they're focusing on employment. But unfortunately, I mean, the numbers don't lie. You know, we're still where we're at. And what we found is no one is focusing on workforce development for higher level professional careers. And no one's really focusing, again on the professional or corporate America. Organizations are unfortunately, trying to fit our community into a little box, what they think we can do, not what we know that we're capable of. And so we really, truly believe that the answer to this, and I'm going to call it, you know, an epidemic, if you will, the unemployment of people with disabilities really has to do with workforce development and making sure that those people who, again, have the ability to do the job also have the opportunity. So we actually began offering Salesforce administration courses, gosh, back o late 2000 teens, we successfully put through eight blind or visually impaired professionals through a Salesforce Administration Certification prep course, and we choose Salesforce specifically because of the accessibility of their platform. And not that it is a B2C accessibility, but it's a B2B. So people within my community and those of us in the Blind and visually impaired community who are the hardest to serve because of the fact that we have to use assistive technology in order to do our jobs. It's allowing that community to get these certifications, get good, long lasting, sustainable careers. You know that they can actually be, you know, climbing up that corporate ladder, not being stuck down at the bottom. So we began our courses in 2020. We actually became the only training provider approved by Salesforce for people with disabilities globally. And that really came about because of our focus on two things. Number one, our courses being virtual, we are meeting. This was even before the pandemic, even before, you know, virtual courses were the thing. We were doing it virtually. We were meeting our community where they were at. We were also focused on employment. Our end goal at BIT is always employment. That's always where we keep our eye on employment. So, you know, we'd already started these courses. We began a Salesforce system integration service within BIT. We also began an accessibility consulting service and began using our students as at that time, interns, we met up with an intermediary, an apprenticeship intermediary called Safal Partners, who looked at our program and said, gosh, you guys already have an apprenticeship program. Kristy: What would be considered a wrap or a registered apprenticeship program through the Department of Labor? So they helped us get registered with the Department of Labor, and we became and still are the only organization, the only registered apprenticeships to include the Pan disability community to include the BVI community. And we're proud of that. And we're also saddened by that because we are the only ones that are doing it this way. The problem was we were only able to do it more of in a project based format, you know? So whenever we had projects, the apprentices worked well. Our apprenticeship program is a competency based program. There have been which now have been lifted, but requirements of 2000 hours really difficult to get those 2000 hours in a reasonable amount of time when it's just ebbs and flows of projects. So we really need to find a way to move into a more structured apprenticeship program. We added a, you know, the digital accessibility space a couple of years after we did the Salesforce admin apprenticeship and fortunately found the DIF grant to help us expand on what we already had running. Carol: So what did this when you get the DIF grant, what it allow you to do differently, moving from that more kind of pilot project kind of format into this structured model? Kristy: Mhm. Well, it allowed us to do essentially that. Number one is add structure. So as I mentioned, for our apprenticeship program, first we were able to add an apprenticeship program manager, which is huge for somebody to actually be able to focus all of their time on overseeing the program. We were able to move it into a more structured program. So we're not only looking now at project based. Our apprentices, you know, are working on regular schedules. Most are completing their apprenticeships between 1 and 2 years. They're able to not only work on those projects and gain competencies through projects, but also work on hypothetical situations we created for those competencies they need to accomplish without the projects we're working on professional development. So it was able to really add, again that structure to make it just a more robust program. In addition to that, we were able to expand on the academy courses that we were able to offer. So what we're learning with the Salesforce ecosystem is essentially the sweet spot is five certifications. It's not enough just to have that foundational cert. So with the DIF grant, we were able to say, okay, we want to get our team to that five certs. Any student that goes through our course, they have the option of getting to those five certifications. You earn two. Just in our foundational course alone. And then we added three higher level courses. In addition to that, we're also able to add a third track. So we have our Salesforce Administration track. We have our digital accessibility track, and now we're going to be able to add an Agile Scrum Master certification or project management track. So it pairs really nicely with the other two tracks in that, you know, all of these projects, they need scrum masters or project managers to run these projects. So now we're able to kind of create that full loop where we're able to have our admins working on their projects. Same with digital accessibility. And then we're able to add, again, these scrum masters and project managers to work on those same projects to build up and gain their experience. So able to expand the Academy. We were also able to add an academy director and an administrative assistant, you know. So again, providing more structure and guidance there. And then additionally, one of the things that we focused on, one of our goals with the grant was to be placed on 30 state eligible training provider lists. And what this allows us to do is really get a lot of that exposure that you were talking about before. Any person who wanted to participate in the program can go to these ETPLs, is what they're called. See if we're on in their state, get the information. You know, if they are workforce boards, VR counselors. Again, just the average Joe that wants to look into some opportunities for training also gives employers the opportunities to come in and see what we're doing, learn about us, you know, get that more exposure. And I think actually now we're on 35 ETPLs. Again, our friends at Safal Partners helped us within the first year achieve that KPI for our DIF grant. Carol: That is amazing. That is really great. I was gonna ask how many you were on and 35 sounds... Kristy: Mhm. And growing and growing. You know, we're we're we're not stopping. Right. We want to be on all of them. Carol: I'm like, you're going to conquer the world. So walk us  through how it works today. You know, you're talking about the academy. You've got the certification, the apprenticeships, kind of how does the whole flow? Somebody comes in, they're like, I want to do the thing. What happens? Kristy: Absolutely. We have a couple of different options to start. So what we decided to do was add two self-guided courses for our two current tracks, Digital Accessibility and Salesforce Admin. So they're intro courses, they're self-guided. And essentially it's just that giving you an introduction to what Salesforce is. A lot of people have no idea what Salesforce is, even though they're one of the largest tech companies in the world. They're in every industry, all the different fields, you know, they're this humongous organization, but a lot of people just don't know what it is. So it gives people the opportunity to get in there, see what Salesforce is. Is this an interest to me? Same with digital accessibility also gives them an understanding of if you're using assistive technology, what is your level of proficiency need to be? Can you be a beginner? And I'll tell you right now, the answer is no. You can't be a beginner if you're using. You know what? I use a screen reader. You know, you have to be a little more proficient than that. So you get through those courses and you decide, yeah, I really liked this. I completed the course. You sit for a technical assessment, you have to do a hands on assessment and then a technical interview. Kristy: And the reasoning for that is to really, number one, ensure that that person who is taking the course is committed, understands the content was doing it themselves, you know, making sure nobody was, you know, helping them out before they can move into the instructor led courses. So once they pass that you can move into the instructor led either, again, digital accessibility or Salesforce, when we add our agile scrum probably won't have an intro to start, but that'll be getting added the later part of this year. And that'll again be instructor led courses, but pretty much the same format. So once you get into the instructor led courses, digital accessibility I believe is 14 weeks. I think admin is now 17 weeks. Again, with admin, you earn two certifications, multiple hours a week in class and then also in lab. In addition to that, there is a lot of homework. There's a lot of work outside these courses. I never sugarcoat these courses. They are not easy. We're talking high level tech careers. So these are high level courses. There's a lot of work, there's a lot of commitment, but there's a lot of support. All of our classes are taught by a person with a disability. Our TAs are people with disabilities. We have focus on those people that need to use screen readers. You know, we have screen reader instructors. So we're really, you know, meeting every person with a disability, regardless of what that is, understanding what accommodations they may need, working with them on that so that they can feel comfortable and actually concentrate on the content and the subject matter and not, am I going to be able to do this course or not? So they get through the instructor led courses leads to sitting for the certification exams. And, and I want to point out to all of the courses that we offer in our academy all lead to industry recognized certifications. These aren't certifications. We make up and say, well, we'll see if it works for you. These are the same certifications that anyone would be sitting for if they were taking any of these Salesforce courses or the digital accessibility, the Agile Scrum Master, you're going to be sitting for the actual Scrum Master certification. So they sit for the exams, you know, hopefully pass it. We've got really good certification pass rates, so hopefully they'll pass it again. They're difficult, they're not easy, but we provide you with what you need in the courses to pass those certs. Carol: What does your pass rate look like. Kristy: So oh boy you just threw that threw that at me. What's the data I believe I think it varies based on the course. But for example, I know our past cohort for digital accessibility, ten out of 12 have sat for the course. And I think all of them have passed. So 100% there. I think most of our cert rates run as a collective whole, 75 to 95%. Carol: Okay. Kristy: Yeah, really good cert rates. And again, it's really because of the fact that these are intense courses, but we work with you. Carol: When you're wrapping service around all these people. Kristy: Exactly. Carol: Talk about the technical kind of support that the students can get. Kristy: You're exactly right. Yeah. You know, and again, a lot of group sessions, you have a lot of support. Carol: Yeah. Kristy: So yeah. So once you get past those certifications, you then become eligible to interview for an apprenticeship. Not everyone qualifies for an apprenticeship. It really depends how well you do in the class. You know, obviously you need to have your certification to get into their apprenticeship. So if you don't get your cert, there's an issue. What was your professionalism like? You know, our instructors provide our apprenticeship manager with notes and sometimes it's, hey, they just need a little more professional development. They need a little work on this. They need to work on that, which is stuff we can provide. One of the things that came with the different is we added in a professional employment coach. So she works with people, you know, maybe you have ADHD and you're looking for tools to help you get organized and to stay focused. And so we bring her in and have sessions together. Sometimes just professional development. There's a lot of people in our community that need a little bit of that. Unfortunately for some of us, when we get on these Zoom calls, we can't see the social cues. We can't tell if somebody is, you know, getting ready to speak or wrapping up what they're speaking, you know, so how do you handle all that? So we do all of that, you know, we provide all of that. But once the instructors say, yep, I think that they should interview for an apprenticeship program, they have to go through an interview with our apprenticeship program manager and another member of BIT. And then if we have openings, which we do, and we will continue to have them through the different, then they become a part of our apprenticeship. And again, those are all apprenticeships or they're competency based used to be 2000 hours. The Department of Labor has lifted that restriction. But we still feel that that 2000 hours is a good number for our participants to really get a good, strong understanding of what they will be doing in this role in mastering these competencies, Professional development. It gives you that 1 to 2 years experience that, you know, whenever you're looking for an entry level job, what do you see? You need 1 to 2 years' experience. Well, how do you get that if you're entry level? And so we're providing that opportunity to do so. Our apprenticeship program has additional trainings that are offered. You're working right alongside with our sales force professionals, our accessibility professionals who all have experience in the field. And again, I will point out to these are teams that are all disabilities working together. So completely deaf admins working with completely blind admins, just killing it, doing an excellent job. So really a lot of exposure in that apprenticeship program. One of the things the DIF grant also allowed us to do is incorporate employer partners. So if you have an apprenticeship with an employer partner still meeting with our apprenticeship program manager. You're still getting all of the support from BIT we're meeting with the project leads at those employers to make sure that we're supporting them in anything they need. So really, like I said, a well-rounded program. Once you complete those competencies, we do self-evaluations. I mean, we're, you know, where you stand in our apprenticeship and what you need to work on. And, you know, we're selling, obviously, the further you get into the apprenticeship program, the more projects you're handed, the more responsibility. So really just gaining your confidence in the field, and then you're ready to go into the world and work in an organization or a corporation out there. Carol: Are you seeing any impact with AI? You know, people talk about AI usage now, and, you know, the increase of that and how it's changing the landscape of corporate America. Are you seeing any impact from that? Kristy: So you've heard of that little thing called AI? Carol: Yeah. Kristy: The answer is an overwhelming yes. So one of the things that we've done in our courses is try to, we try to make them future proof. You know, we don't want to send our students or our apprentices out into the world behind the eight ball, you know, oh gosh, this is a saturated market. I don't have any of the skills. So one of those higher level Salesforce certifications I told you about is agent for specialist, which is Salesforce AI. And Salesforce has gone all in on agent force and their AI. So our apprentices have the opportunity to become certified in agent force. And then, you know, different projects we're working on. We're now talking to a lot of clients that are looking into how can I incorporate AI into my Salesforce environment? So, you know, giving them people then that opportunity to get those skills so that they can make an immediate impact. Additionally, in the Scrum Master or the project management track scrum Master has just added the AI Scrum Master certification course. So we will be actually including that in our course. So again, you'll come out of that track with if you're looking at Scrum Master, you're looking at two shirts, one of which is AI. We're also adding a higher level AI course, that's AI governance. Most of these companies are looking at this going, okay, we have AI, but when should we be using it? How should we be using it? What is ethical? What is not? What is going overboard with AI, you know? So we're actually going to provide a course. So again, our participants can come out able to make immediate impact on organizations. And the way to do that right now is AI. So we absolutely are incorporating AI. People with disabilities to, you know, again, we say at BIT Technology is the greatest equalizer. It truly is. And people with disabilities are actually leading the charge in AI. In fact, that agent for specialist course I mentioned, out of all of the workforce development orgs within Salesforce, we were the first one to offer that course. So disability community leading the way in AI. So it's exciting. Carol: I love it. Well, you're ahead of the curve, which is super good. And people come in with that. They'll definitely. I mean, you're creating a good niche there with your apprentices being able to do that. Kristy: That's our goal. Carol: That's awesome. So what are you seeing as a career pathways like what's proving to be the most impactful right now? Kristy: So you know, again, Salesforce is just huge. So of course that is, you know, continuing on and that is definitely making a big impact. Digital accessibility is a very hot topic right now. Gosh, a couple years ago, I can't remember what year it was actually implemented. But the Department of Justice has now mandated that title two of the Americans with Disabilities Act incorporate digital accessibility. And they actually laid out deadlines. They just pushed the first deadline. It was supposed to be April of 2026, that all municipalities with over 50,000 individuals had to be digitally accessible. Everything within your state needs to be accessible for people within our community to access. 2027 was supposed to be for those municipalities, less than 50,000. I imagine that'll get pushed back as well. But the bottom line is if your organization, your front facing organization is not accessible, you're going to encounter some issues. And so all of a sudden then all of these corporations and organizations and government and they're going, okay, what is this? What is digital accessibility and how do we get there? So we're really starting to see a lot of impact, a lot of clients coming to us asking, okay, what is digital accessibility? How can you help me? One of the members of Office of Accessibility for Salesforce is actually said that there's two experts in Salesforce accessibility, and one is Salesforce and one is bit. We work very closely with them on accessibility and their accessibility. I think really that impact digital accessibility. We're going to see it more and more and more. Unfortunately, a lot of lawsuits are being filed. And when I say unfortunately, it's that's what's being the precursor for companies to become digitally accessible. You know, I wish they would just because it's better for everyone. An accessible product is just a better product. It's more well thought out, it's more intentional. It's just better presented. I wish that it wasn't that they're being forced to because of litigation. I wish that it was just because that is again, the right thing to do. Plus, this disability community is large across the world. I think it's 1 in 5 now, and more and more people are aging. More and more people are being diagnosed with disabilities. Where before in tech, people were just considered eccentric. When I think a lot of them were actually, you know, on the autism spectrum or neurodiverse, so that, you know, a lot of invisible disabilities, mental health disabilities are now become not so taboo to hide and to talk about. So it's something that, you know, the world's just going to see more and more of, and the demand for making things more accessible to reach your customers, to reach that community is going to become more and more. So I really think that digital accessibility track is getting a lot of focus. Carol: That is very cool. I know employer engagement also is a big piece of all this, and how are you partnering with companies and what are they seeing as value from what you offer? Kristy: So apprenticeships is huge right now. Apprenticeships really provide employers the opportunity to get kind of a jump on the talent pipeline, both this current administration and the former administration, very pro apprenticeship. You know, they have apprenticeship mandates out. I believe it's a million apprentices is what they want to attain. And then there's proven statistics. I'll give you some data here, Carol, for companies that have an apprenticeship program, typically for every dollar that's invested in that apprentice, the company is seeing an ROI of $1.44. So immediately getting impact with having an apprentice, 94% of the apprentices stay where they're at when they become an apprentice within a company. So turnover is really expensive for companies, incredibly expensive. And so not only if you have an apprenticeship, you're looking at a 94% retention rate. But then to add to that, the people with disabilities community, our turnover rate is incredibly low because it has been difficult to find employment. If the person with a disability finds a place where they can be successful and thrive, they're not going anywhere. So you kind of get a double whammy on that. Apprentices typically come out earning 84,000 a year, and they're saying 49% of HR managers are saying that skill based is really kind of the new and compelling look at talent management. One of the things that, again, as I mentioned before, the DIF grant allowed us to do is start reaching out to employer partners, having them bring on apprenticeships, not necessarily being trained within BIT, but actually going into their organizations, working with their Salesforce teams, working with their digital accessibility teams and again, creating this talent pipeline I mentioned earlier, it's not the lack of ability, it's the lack of opportunity. Again, these apprenticeship programs are really providing people within our community the opportunity to go in there and prove themselves, to show these companies. You know, unfortunately for the people with disabilities community, that really is we call it that legal, nebulous bell that we have to ring is the reasonable accommodations. Most people don't understand them. If you get an apprenticeship in there, you're working alongside that apprentice to really determine, okay, how is this person going to be most successful and really getting over that fear of what the reasonable accommodation is. So our impact with employers has been fabulous. It's been phenomenal. A lot of interest, again, in bringing on these apprentices to work on their teams, give them again that opportunity to kind of dip their toe into that pool. I want to mention, too, that we really believe that the disabilities community is the greatest untapped talent in the planet. You have this whole group of resources that are so talented and nobody's touching and working with organizations like BIT. Working with these apprentices really gives you that opportunity to dip into that talent and have this just amazing pipeline, amazing resources to work with instead of going the typical talent route. And we have a tech talent shortage, we really do. So, you know, working with, again, like an apprenticeship program, working with our team really gives people the opportunity to get that jump on that talent. Carol: Well, and they get to work in that company. You know, you're in that company and the company culture. You're all part of it you've done these 2000 hours. You know, you've been there a year or more. Kristy: Exactly. Carol: And so they really get a good flavor of what you bring to the table. It's such a great way. I mean, you see that more and more kids are starting to realize like maybe the four year degree route isn't the way. Kristy: Mhm. Carol: We need to look at these other options for getting into employment and getting in more quickly, because everybody learns differently, and these jobs, I mean, when you're talking, people are coming on average $84,000. This is no joke. Kristy: No it's not. Again, it's a good way to get into, again, your feel to get your foot in the door. Give those companies the opportunity to really get that new and emerging talent, but not expecting them to just hop right in the job because, he said, we all learn differently. There's a lot of nuances to learn about different companies. You know, you're an admin at one company and you go to another. And again, you know, you've got that hill to climb of, you know, what are the nuances of that particular company. But here you built your own army, if you will. You built your own pool. Carol: Yeah. Kristy: One of our apprentices actually in a webinar we did recently, she had said, you know, one of the benefits to employers is you essentially get to mold these apprentices into what type of employees that you're looking for. And it's true, you're almost taking a blank slate and working with it for two years and building your team the way you want. And then like you said, you know, you're done with that 2000 hours. Why would you go anywhere else? You've already invested this time. Again, we've given you the statistics on the ROI in that dollar investment. You're already earning money off the apprentices, so why wouldn't you stick with them? Carol: 100%. Now, I know you had some success with the workforce boards and a few blind service agencies, but you've had less traction with VR. What's been the challenge there and what do you want, like the VR agencies to understand? Because I know we sure miss the whole boat and didn't even realize a thing about BIT and I've been telling everybody ever since I talked to you first, like, hey, you need to go look at this website and you need to talk to these people because I've just been like, wow, why is VR missing the boat on that? Kristy: Well, I think you're kind of hitting the nail on the head there, Carol, in that we are not your normal traditional organization out there. We know we are actually the only organization doing what we're doing. And we know that because not only have we looked, but Salesforce has looked. Our other partner, Ronstadt, has looked, you know, they've looked around for other organizations like us doing what we're doing, the manner in which we're doing it, and there aren't any out there. So I've been thinking about this since you and I spoke last time about, you know, really what is our problem with VR? What is the issue? And I really think it comes down to that fact that we are breaking the mold. Our friends at Safal Partner, you know, talk with us all the time about you guys are really forging ahead with something that's never been done before. And so how do we get the VR groups, the VR counselors and teams to break out of what their traditional mold has been and kind of think out of the box and look at our organization go, oh, wait, because unfortunately, the traditional is not working. I mean, the numbers say it, you know, those numbers haven't moved. And I think the VR counselors, they have to do certain things certain ways. And they have reports that they have to do and they need to meet different criteria. And, you know, our programs aren't short. You know, it's not like somebody can get in and out in a month and then they're employed. You know, we're really investing the time in training people to really be productive employees in a completely different way than ever been done before. So I think if we can get the VR groups to open up their minds to a different way of doing things and to recognize the fact that these traditional ways we've been doing things just really aren't moving the needle. And I think a lot of the, you know, VR counselors, again, they're they have cases they have to close, they have rates that they have to hit. They again, they have all this documentation they have to do. And so I think a lot of times they try to put a square peg in a round hole, and it just doesn't work for people with disabilities community. You have to understand where they're at, you know, Social Security disability, a lot of people are on it. It is not easy to get on. Our goal is to get everyone off of it, not to provide them with a supplement to their SSDI. We want everyone to become tax producers, not tax consumers. So when you get people who are capable, who are software engineers, who have these, you know, the great focuses on tech, this critical thinking mindset that can do so much more than just getting a job. Being able to think outside the box, look at other opportunities that might be out there and go for it. You know, we've been successful, we're showing that this is the way you do this with this group. So that's really the only answer I can come up with, Carol, is why we're not making more traction is just that traditional mindset of this is how we do things. And unfortunately, that traditional mindset is just not helping our community well. Carol: And hopefully we're able to get the word out now through the podcast and advertising that because it is like a no brainer to me. I mean, you're looking at your wants to get people into quality employment outcomes. And I used to always be about like family sustaining wages. And so you're talking about this investment and the people, even though it takes a longer amount of time. But if you've got folks coming out, you know, you've got a big track record, you've worked 2000 hours, you've done this apprenticeship, you've done all this coursework ahead. You have these certifications. You now are geared up for really good employment and long term employment. We're not talking, you know, you're in and out of the fast food place. You want to stay here. You're now engrained in a company. Like what a way to set folks up for success and not needing to come back to you, or to Social Security or any of those other supports. You've really got people launched in such a great way. Kristy: Right? And on that note, so our participants earn an average of, I think, 75,000. And within three years of employment, the majority have been promoted and are making over six figures. So as you said, their family sustaining wages with opportunities of growth. And that's really what our community needs in opportunities, is that the community does not want to be on Social Security disability. They don't they want to be able to put food on their table. You know, with employment comes a lot of dignity. It comes a lot of feeling of worth and being a productive member of society. The community wants that and they know they can do that. We're just lacking the opportunity. Again, lacking that open mindset. I know there's a lot of VR counselors that say, hey, I'm going to put you through college and I'm going to get you this bachelor's degree. And our unemployment rate is still the same, right? We need more than that. You know, you need more of an investment, not just the traditional. I am old enough to remember the days that my parents just said, oh, just get a degree, right. Doesn't matter what it's in. Just go get a degree, you'll get a job. That's not today. You know, today's the day of specialization. As we talked earlier, today is the day of certifications. You know, people want certs. They want experience. They want skills, they want proof. And they're looking at effective employees to, you know, how effective are you an employee? Are you going to be great? You've got this bachelor's degree, but can you be effective in this role? Hiring managers say they can train for those hard skills. You know, they can train somebody to, you know, code in a certain Manner or become an HR professional. You can train a lot of that, but you can't train the effectiveness. You can't train the critical thinking as much as you can when you're in the role. Our program helps to do that though. You know, it really helps people to develop those skills, to become those critical thinkers, those problem solvers that these hiring managers are looking for. Carol: It really is the full package. What you offer. I just I'm still stunned thinking about like that. We've all missed the boat for 20 years or plus you've been around. So it's not too late though for people to get on board. So looking ahead, what does success look like for your project and what should other people be paying attention to? Kristy: Mhm. Of course, the whole goal for this project is competitive integrated employment. And of course, again, that goes right along with our mission from the very beginning. It's employment. You know, that CIE number is again that family sustaining wages that you can have good strong careers in. So when we're looking at our future, the grant has provided us the opportunity to really build our programs again, provide a lot more structure. So of course, sustainability. Our goal is really to grow our own sales force system integration services, our own digital accessibility services. So that number one, we can be a huge employer of people with disabilities and really build these big sales force teams. The other thing is really finding the employers who are interested in investing in this community. You know, who again, are thinking outside that box of, you know what? I have a talent shortage and I need to find a pool that is really going to benefit my company, provide an ROI, you know, be here. So I'm not hiring somebody every six months. So really, again, you know, getting the word out, we want people, of course, to know about our program to look at our program. You know, we're focused on tech. Tech is not the only industry that could benefit with this type of program, not in any way, shape or form. So we really like people to look at our program and say, okay, you know, our focus is X, you know, maybe it's marketing, maybe it's finance, accounting, whatever it is. And really look at our program and say, I think this is the model that we need to follow. You know, it is a very collaborative organization. We are not going to get where we need to be in silos. We need the whole village to work together to provide these opportunities. Again, really trying to show that we really feel this is the path forward for many careers, for many high producing, effective, high compensation careers. We'd really like people to, again, look at our program, look what we're doing in the different, obviously different is a demonstrative grants. That's the whole thing we're doing here is demonstrating that we really feel that our model is the way to go. Really take a look at apprenticeships and apprenticeships for people with disabilities. I really feel apprenticeship just are tailor made to people with disabilities for them to really, again, get really comfortable to build their skills and show that, yeah, I've got the ability. Just give me that opportunity. I've got the ability. Carol: I can totally see why RSA selected you as a grant. Kristy: Oh thank you. We're pretty passionate here at BIT. Carol: You are and it's amazing. So folks wanted more information about BIT, what's the best way to find you or contact? Kristy: Absolutely. So of course the best way is our website. It's just easy. BlindInstituteOftechnology.org. You can also get it by blindIT.org. You'll find all the information there. Otherwise you know, reaching out. If you are interested in our Academy, Academy@blindIT.org, we have candidates@BlindIT.org or sales@blindIT.org. Any of those, if you can't remember any of them and you can only remember, oh, she said Sales@BlindIT.org, but I'm really not in sales still go to that email address. We're looking at over 50 of us. Our internal team, you know, is about 25 to 30. We're very tight knit, so it's going to get to us. So any of those email addresses work and you can find them all on our website. So again, BlindInstituteOfTechnology.org or BlindIT.org will get you there as well. Carol: So no wrong door in. Kristy: Nope, nope. We will get you to where you need to be. Just let us know what you're looking for, what you're interested in, and we will find the person for you. Carol: Well, that is awesome and I know I am going to sing your praises going forward. Like continue to like tell people about what is happening there. It's pretty amazing. I really appreciate your time. I wish you much success. Thanks for joining me. Kristy: Thank you so much, Carol. I appreciate the opportunity. {Music} Outro Voice: Conversations powered by VR, one manager at a time. One minute at a time. Brought to you by the VRTAC. Catch all of our podcast episodes by subscribing on Apple Podcasts, Google Podcasts, or wherever you listen to podcasts. Thanks for listening.

Promising oral treatment moves closer for Stargardt patients.

Many disease‑causing genes are too large to be packaged into standard AAV gene therapy vectors, leaving a long list of otherwise gene-therapy-ready conditions without viable treatments. SpliceBio is leveraging a protein splicing platform based on engineered split inteins to overcome the cargo limitations of AAV gene therapy vectors, enabling delivery of large genes to potentially treat a broad range of monogenic conditions. The company's lead program is a dual AAV gene replacement therapy to treat Stargardt disease, a rare inherited condition that causes progressive vision loss. Miquel Vila-Perello, CEO of SpliceBio, discusses the company's platform technology that enable to the delivery of large genes in AAV vectors, its work to date in Stargardt disease, and preclinical data across more than 20 large-gene targets supporting its platforms use in ophthalmology and CNS indications.

This week, the AT Banter crew is very much in the house – basement, man cave, and all – as we welcome Matthew Reeves, a legally blind psychotherapist, rehab counselor, and host of the Insight Out podcast. Diagnosed with Stargardt's Disease at 12, Matthew is a a therapist focused on helping people live well with vision loss, disability, chronic illness, and chronic pain. Now he's using both his training and his lived experience to support a community that often feels isolated and underserved. If you or someone you love is navigating vision loss, this conversation is honest, validating, and quietly hopeful. It doesn't sugarcoat the hard parts, but it also makes space for the possibility that, like Kintsugi, we can come back together different, but stronger and more valuable than before. Show Transcript https://atbanter.wordpress.com/wp-content/uploads/2026/05/at-banter-podcast-episode-459-matthew-reeves.pdf Show Notes Insight Out Podcast https://www.insightoutpod.com/ AT Banter is brought to you by Canadian Assistive Technology, providing sales and training in Assistive Technology and Accessibility with over 30 years of knowledge and experience. Visit them online at www.canasstech.com or call toll-free 1-844-795-8324 or visit their Assistive Technology Showroom at 106 – 828 West 8th Avenue, Vancouver. Need repairs on your device? Chaos Technical Services offers service and support on almost any piece of Assistive Technology, while also providing parts and batteries. Visit them online at www.chaostechnicalservices.com or call 778-847-6840.

The RNIB has announced today (7 May 2026) that actor, and star of Disney+ UK's ‘Rivals,' Victoria Smurfit has been appointed as the charity's new President. Victoria takes on the role as Dame Gail Ronson DBE steps down after 14 years of dedicated service.Victoria brings a personal connection to RNIB as mum to Evie age 21, who was diagnosed with Stargardt's Macular Dystrophy as a child. Victoria also has a longstanding family connection to RNIB through her father, Dr Dermot Smurfit, an RNIB Vice-President, who has supported the charity for decades.RNIB Connect Radio's Toby Davey caught up with Victoria to find out how she feels taking up the role of President of the RNIB following on from Dame Gail Ronson DBE, more about her family's long-standing connection with the RNIB, a couple of areas of work around sight loss that Victoria would like to champion as President plus reflecting on watching her daughter Evie grow up with Stargardt's Macular Dystrophy.Image shows Victoria and Toby with guide dog Boston behind the mixing desk in the Connect Radio studio in London

What is ocular gene therapy, and could it treat inherited retinal diseases like Stargardt and Usher syndrome? In this episode, I'm joined by Dr. Jayashree Sahni of AAVantgarde to break down how gene therapy works, what clinical trials involve, and what patients can expect. We cut through the myths and explore the real potential of gene therapy for vision loss. Contact AAVantgarde to learn more: ► www.aavantgarde.com ► clinicaltrials@aavantgarde.com ► patientadvocacy@aavantgarde.com Get the full transcription here: ► https://docs.google.com/document/d/17yR24WkAZ2lHd1iCoKXtANoZ-vFd6XqU5K5d154kjgE/edit?usp=sharing #GeneTherapy #Stargardts #RetinitisPigmentosa #Blindness #VisionLoss #AssistiveTechnology #ClinicalTrials #EyeHealth #AAVantgarde

Os damos la bienvenida a un nuevo encuentro en Canal Retina para descubrir una historia de superación y liderazgo que cruza el océano. En esta oportunidad conversamos con Marina Leite Brandao, una activista brasileña diagnosticada con la enfermedad de Stargardt que dedica su vida a la defensa de los derechos de los pacientes en organizaciones como Retina Internacional. Durante nuestra charla, Marina comparte cómo afrontó la pérdida visual desde su infancia, la relevancia de la educación para su autonomía y las innovadoras iniciativas de accesibilidad que disfruta en su ciudad, Belo Horizonte, donde la tecnología aplicada al transporte y el acceso a la cultura mediante la audiodescripción demuestran que es posible vivir una vida plena y conectada con la comunidad. Visítanos: Página oficial de la asociación https://www.retinamurcia.org Nuestro canal de podcast https://canalretina.org Síguenos en todas las redes como @retinamurcia

A landmark Phase 3 trial has delivered the first positive result for Stargardt disease treatment — but the therapeutic landscape is shifting fast. Prof. Maximilian Pfau enjoys a discussion with Prof. Carel Hoyng and Dr. Karolina Kaminska on the ABCA4 disease spectrum, the groundbreaking discovery of AP5 complex-related macular dystrophy, and emerging therapies from oral drugs to gene-specific approaches

What does it take to step beyond comfort and truly build independence? In this episode of Blind Abilities, Louie McGee shares his journey from Minnesota to law school in Chicago, proving that curiosity—not perfection—is the real key to success. Born with Stargardt's, Louie doesn't just adapt—he explores. From completing a triathlon and rafting the Grand Canyon to studying abroad in London, he shows how asking questions and taking chances can open doors you didn't even know existed.   For students beginning their academic journey, Louie offers a powerful message: your path isn't about having everything figured out—it's about being curious enough to try. Whether it's learning new technology, navigating a new city, or simply asking for help, every step forward builds confidence.   This conversation is a reminder that independence isn't about doing everything alone—it's about discovering how to move through the world in your own way.   Links of interests: The Spectacle Newsletter Youth Services at SSB To find out more about the services provided at State Services for the Blind, and what they can do for you, contact Shane DeSantis at shane.desantis@state.mn.us or call Shane at 651-385-5205.   Thanks for listening!   Full Transcript  

Can a strong U.S. biopharma industry be reconciled with the successful emergence of China? And can China be a catalyst of positive change across the global industry, even if this implies some level of rebalancing away from the U.S.? On the latest BioCentury This Week podcast, BioCentury's analysts discuss a Guest Commentary by McKinsey Senior Partner Emeritus Franck Le Deu, who argues that a multipolar biopharma world in which the U.S. continues to thrive even as China becomes meaningfully stronger can emerge.The analysts also discuss BioCentury's latest Rare Disease Spotlight, which focuses on a wave of therapies aiming to activate retinal function in Stargardt disease patients.Turning to FDA, BioCentury Washington Editor Steve Usdin discusses recent public statements by FDA Commissioner Marty Makary, questions about Vinay Prasad's future, and the plausible mechanism pathway.View full story: https://www.biocentury.com/article/658606 #GlobalBiopharma #ChinaBiotech #RareDisease #StargardtDisease #FDAPolicy 00:00 - Introduction02:47 - Multipolar Biopharma World13:39 - Rare Disease Spotlight25:15 - Makary Remarks31:14 - Plausible Mechanism FrameworkTo submit a question to BioCentury's editors, email the BioCentury This Week team at podcasts@biocentury.com.Reach us by sending a text

Mr. Beast Biography Flash a weekly Biography.Hey darlings, its your girl Roxie Rush here, your AI gossip guru powered by the smartest tech out there so I can scoop every sizzling detail faster than you can say viral video. And honey, MrBeast is on fire these past few days. Just this week on February 21, Unilad Tech reports he dropped a bombshell YouTube vid rebuilding 10 schools worldwide, pouring over a million bucks into Ghana alone tearing down unsafe buildings, adding teacher bungalows, boreholes, kitchens, and free lunches till 2030 thanks to the Rockefeller Foundation. Ghana Web says locals enstooled him as a development chief amid total jubilation picture that glow-up.Then bam, NDTV dropped he spilled hes borderline blind in his right eye from what docs link to Stargardt disease that blurry central vision beast making him squint even with contacts. Fans freaked, but Jimmy owned it like a champ, turning personal struggle into a wake-up call on eye health. No cure yet, but gene therapies are brewing pause for the drama.Business wise, NBC Right Now announced Monday his Beast Industries snapped up Step, that Gen Z banking app for credit-building and investing no price tag spilled, but Jimmy posted Nobody taught me money smarts growing up, so now hes handing it to millions. Feastables is still crushing, and his Amazon Beast Games season two wraps this week.Oh, and Dexerto caught him collabing with Twitchs Malon Garcia, teasing a massive pivot hell yeah, live streaming 100 peeps in a circle for a million-dollar last-standing prize. From 20-minute vids to marathon chaos could be his next empire shift, but unconfirmed if hes ditching YouTube for good.No fresh public spots or social buzz in the last 24 hours, but this eyesight reveal and banking buy scream long-term bio gold reshaping his philanthropist mogul vibe.Thanks for tuning in, loves subscribe now to never miss a MrBeast update, and search Biography Flash for more epic bios. Muah.And that is it for today. Make sure you hit the subscribe button and never miss an update on Mr. Beast. Thanks for listening. This has been a Quiet Please production."Get the best deals https://amzn.to/4mMClBvThis content was created in partnership and with the help of Artificial Intelligence AI

Ben Mehl is most recognized for his role as Dante on the hit Netflix show "You." Other TV credits include "The Good Wife," "Supernatural Investigator" and films like "My Christmas Guide" and "Viral Beauty." On stage he has performed with The Public Theater and Williamstown Theatre Festival. He's also a passionate acting teacher and volunteer at the 52nd Street Project. On this episode he tells us the story of finding out he had Stargardt disease, coming to the decision to go ahead with his dream of being an actor despite being legally blind, and the piece of advice a teacher gave him that miraculously made this mountain much easier to climb. Plus we talk about why telling the truth in your life fuels your acting, how teaching has informed his craft, the importance of "trusting the work that you're doing," and much more. Back To One is the in-depth, no-nonsense, actors-on-acting podcast from  Filmmaker Magazine. In each episode, host Peter Rinaldi invites one working actor to do a deep dive into their unique process, psychology, and approach to the craft.  Follow Back To One on Instagram

What types of delays do Stargardt disease patients experience when it comes to diagnosis? And what are the implications for such delays? Alexis Warren, MD, is joined by Jesse Sengillo, MD, and Sruthi Arepalli, MD, to discuss findings from a recent paper quantifying delays in diagnosis and suggesting means by which such delays could be mitigated.

Jaypirca gains expanded approval; allograft approved to restore peripheral nerve function; baxdrostat to be reviewed as an add-on treatment for hypertension; treatment for a genetic eye disorder that causes vision loss shows promise; and an autoinjector to treat edema is accepted for Priority Review.

Send us a textGood morning from Pharma Daily: the podcast that brings you the most important developments in the pharmaceutical and biotech world. Today, we'll explore the latest advances and strategic moves shaping the industry, providing you with insights into how these developments might influence drug development and patient care.The pharmaceutical and biotech sectors are currently experiencing a wave of transformative changes. A significant development is the trade agreement between the United States and the United Kingdom, which excludes medicines from import tariffs. This strategic move, orchestrated by the Trump administration, is set to reduce costs and bolster investments in pharma sectors across both nations. By enhancing market accessibility, it aims to stimulate cross-border investment in pharmaceutical research and production.On the clinical front, Eli Lilly is making headlines by joining Novo Nordisk in reducing self-pay prices for its GLP-1 receptor agonist, Zepbound. This reflects a broader industry trend towards patient-centric pricing models aimed at improving affordability. With healthcare costs on the rise, these measures could ease financial burdens for patients requiring long-term medication regimens.Regulatory updates are also making waves, with the FDA planning stricter vaccine regulations under Dr. Vinay Prasad's leadership at the Center for Biologics Evaluation and Research (CBER). These updates come amid concerns over vaccine safety during COVID-19-related incidents, underscoring a commitment to maintaining public trust in vaccines. Regulatory scrutiny continues as Prasad focuses on COVID-19 vaccine safety in children amid reports linking 10 child deaths to vaccines via VAERS—emphasizing challenges interpreting safety data while highlighting the need for robust methodologies ensuring reliable causality conclusions.In corporate restructuring news, Valneva is streamlining its operations by closing a site and eliminating 30 roles. This move highlights an industry focus on optimizing resources to bolster vaccine development pipelines. Meanwhile, Microsize and Schedio's acquisition of Lonza's Swiss micronization plant underscores ongoing investments in advanced manufacturing technologies critical for high-quality pharmaceuticals.In ophthalmology, Belite Bio is advancing with promising Phase 3 results for tinlarebant in treating Stargardt disease—a rare genetic eye disorder. This success positions Belite to file for FDA approval, potentially expanding treatment options for this underserved patient population. Such advancements in targeted therapies emphasize the need for ongoing research in genetic disorders.Regeneron is betting $150 million on Tessera's gene writing technology targeting alpha-1 antitrypsin deficiency (AATD). This collaboration highlights the industry's growing interest in gene therapy as a frontier for treating rare diseases, marking a shift towards precision medicine where tailored genetic interventions offer hope for previously untreatable conditions. Regeneron's strategic move investing $275 million partnering with Tessera exploring gene editing capabilities—focusing on TSRA-196 targeting the SERPINA1 gene linked to AATD showcases potential advancing therapeutic options for genetic disorders through gene editing technologies offering new disease treatment avenues.AI-driven platforms were spotlighted at RSNA 2025 by industry leaders such as GE Healthcare, Philips, and Siemens. These innovations promise to revolutionize radiological workflows by enhancing diagnostic accuracy and operational efficiency through AI integration. As AI continues to permeate healthcare technologies, its potential to transform diagnostic processes marks a significant leap towards personalized medicine.Akebia Therapeutics' acquisition ofSupport the show

We love to hear from our listeners. Send us a message.In episode 116 of Cell & Gene: The Podcast, Host Erin Harris talks to Dr. Arun Upadhyay, Chief Scientific officer, Head of Research and Development at Ocugen to discuss how the company's modifier gene therapy platform is redefining treatment possibilities for inherited retinal diseases such as retinitis pigmentosa, Stargardt disease, and geographic atrophy. Dr. Upadhyay explains how Ocugen's gene-agnostic approach differs from traditional single-gene therapies by targeting shared disease pathways to preserve photoreceptors and slow vision loss across diverse genetic mutations. He also shares key lessons learned from advancing OCU400, the first modifier gene therapy to receive a broad FDA indication for retinitis pigmentosa, including challenges in clinical trial design, endpoint selection, and manufacturing scalability.Subscribe to the podcast!Apple | Spotify | YouTube Visit my website: Cell & Gene Connect with me on LinkedIn

The dry AMD pipeline is packed. Join New Retina Radio as we break it down with Peter Kaiser, MD, whose podium presentation at AAO 2025 offered a survey of developmental projects in dry AMD. What should we look forward to? And Michel Michaelides, MD, shares details from the DRAGON study, which examined the safety and efficacy of tinlarebant (Belite Bio) for the treatment of Stargardt disease. Could a once-daily oral tablet lead to positive outcomes for patients? Listen to the episode to learn more.

A pet owner discovers her cat nursing a baby rabbit, Christie, who has Stargardt disease, prepares to climb Mount Kilimanjaro, a water lily pad weight stacking competition takes place across botanical gardens, Officer Steven Harris spends his own money to help a deaf man stranded in Pittsburgh, and Heinz resolves the debate on whether ketchup should be stored in the fridge or cupboard.Unlock an ad-free podcast experience with Caloroga Shark Media! Get all our shows on any player you love, hassle free! For Apple users, hit the banner on your Apple podcasts app. For Spotify or other players, visit caloroga.com/plus. No plug-ins needed!Subscribe now for exclusive shows like 'Palace Intrigue,' and get bonus content from Deep Crown (our exclusive Palace Insider!) Or get 'Daily Comedy News,' and '5 Good News Stories' with no commercials! Plans start at $4.99 per month, or save 20% with a yearly plan at $49.99. Join today and help support the show!We now have Merch!  FREE SHIPPING! Check out all the products like T-shirts, mugs, bags, jackets and more with logos and slogans from your favorite shows! Did we mention there's free shipping? Get 10% off with code NewMerch10 Go to Caloroga.comGet more info from Caloroga Shark Media and if you have any comments, suggestions, or just want to get in touch our email is info@caloroga.com

October 17, 2025. Sam Seavey, founder and host of the acclaimed The Blind Life YouTube channel, talks with host Ben Shaberman about his journey with Stargardt disease, some of the latest assistive technologies, and how the 900+ videos on The Blind Life can be informative and helpful for people with low vision.

Als Jenny Stargardt vier Jahre alt war, erkrankte sie lebensbedrohlich an einer Meningokokken-Meningitis – und überlebte dank schneller Hilfe. Heute ist Jenny selbst zweifache Mutter und erzählt im Podcast, wie diese Kindheitserfahrung ihr Leben geprägt hat: von den Ängsten ihrer Mutter über den Krankenhausaufenthalt bis hin zu den Fragen, die sie sich heute rund um Gesundheit, Impfungen und den Schutz ihrer eigenen Kinder stellt. Jetzt reinhören, abonnieren & weitersagen!

Pete Gustin is an award-winning American voice actor, producer, and former radio personality whose voice has defined major media brands. His work spans television commercials, film trailers, promos, and animated series such as Family Guy. Born with Stargardt's Disease, Pete had perfect vision as a child but began losing his sight at age eight. Undeterred, he launched his career in radio production and on-air performance before transitioning full-time into voice acting in 2002, beginning with a campaign for Grand Theft Auto. In 2020, Pete's incredible story was featured in the documentary Blind Surfer with Pete Gustin, which captured his unstoppable drive and his passion for surfing despite vision loss. Beyond his studio work, Pete shares motivational and uplifting content with over 750,000 TikTok followers and over 2.5 million followers on YouTube; inspiring millions worldwide. Originally from Massachusetts, Pete credits his mother for instilling in him the determination to push through challenges and pursue his dreams. His life and career stand as a testament to perseverance, creativity, and the power of the human voice to move and inspire.   In this episode, Pete shares his journey of resilience, the lessons he's learned in building a career that breaks barriers, and what it truly means to be a Trailblazer — and find out how you can become one too!  

In this interview, we sit down with John Tobin, Vice President of Clinical Operations at Splice Bio, to explore groundbreaking gene therapy research for Stargardt's disease and its potential impact on the blind and visually impaired community. John shares insights into Splice Bio's mission, how their innovative work could transform options for people living with vision loss, and what families, professionals, and supporters should know about emerging treatments. Stay tuned until the end for information on how to get involved in Splice Bio's clinical trials. Learn more here: www.splice.bio/clinical Or send an email to: Clinicaltrials@splice.bio #SpliceBio #genetherapy #clinicaltrials

In this powerful and emotional episode, journalist Lauren tells her Mormon story publicly for the first time. Known for covering others' experiences—including the high-profile Lori Vallow Daybell trial—Lauren now opens up about her own journey through faith, trauma, resilience, and healing.She shares her upbringing in the LDS Church, the influence of her legally blind father, and her early fears around death that led to a fascination with true crime. Lauren details her mission to Ohio, her shock upon learning about polygamy, and her love for investigative storytelling.The story takes deeply personal turns as she opens up about receiving a misdiagnosis of Stargardt disease, her father's arrest and trial, her own struggles with mental health, sexual assault, marriage trauma, and the challenges of being a Mormon woman in journalism.From painful experiences to moments of empowerment in her career and community, Lauren's account is raw, inspiring, and unflinchingly honest.Hear about her upcoming memoirStay for the vulnerable reflectionsSupport Lauren's journey by watching to the end___________________YouTubeMormon Stories Thanks Our Generous Donors!Help us continue to deliver quality content by becoming a donor today:⁠⁠One-time or recurring donation through Donorbox⁠⁠⁠⁠Support us on Patreon⁠⁠⁠⁠PayPal⁠⁠⁠⁠Venmo⁠⁠Our Platforms:⁠⁠YouTube⁠⁠⁠⁠Patreon⁠⁠⁠⁠Spotify⁠⁠⁠⁠Apple Podcasts⁠⁠Social Media:⁠⁠Insta: @mormstories⁠⁠⁠⁠TikTok: @mormonstoriespodcast⁠⁠⁠⁠Join the Discord⁠⁠Contact us:MormonStories@gmail.comPO Box 171085, Salt Lake City, UT 84117

In this episode of New Insight, host Veeral Sheth, MD, MBA, director of clinical research at University Retina and Macula Associates, speaks with Roland Mattern, director of marketing for eSight, about the development and clinical potential of the eSight Go – a fifth-generation wearable low-vision device designed to enhance central visual function in patients with conditions such as macular degeneration, diabetic retinopathy, and Stargardt's disease. 00:00 - Intro 02:06 - History of eSight 05:43 - Difference Between 4th and 5th Generation eSight Go 07:51 - Patient Experiences with the eSight Go 10:22 - Returning to Daily Life with the eSight Go 13:27 - Why Retina Specialists Don't Hear About the eSight Go 17:07 - Next Steps for eSight

In this episode of Inner Drive, Paralympian Orla Comerford sits down with Colm Boohig to discuss being diagnosed with Stargardt disease as a child and her attitude to progressively losing her sight while also maintaining a deep love and passion for both her art and athletics. This is the third episode in season two of Inner Drive which follows the highs and lows of some of Ireland's best sportspeople. Inner Drive in partnership with Allianz, proud sponsor of Paralympics Ireland. #StopTheDrop

In this episode of Inner Drive, Paralympian Orla Comerford sits down with Colm Boohig to discuss being diagnosed with Stargardt disease as a child and her attitude to progressively losing her sight while also maintaining a deep love and passion for both her art and athletics. This is the third episode in season two of Inner Drive which follows the highs and lows of some of Ireland's best sportspeople. Inner Drive in partnership with Allianz, proud sponsor of Paralympics Ireland. #StopTheDrop

In this episode of Inner Drive, Paralympian Orla Comerford sits down with Colm Boohig to discuss being diagnosed with Stargardt disease as a child and her attitude to progressively losing her sight while also maintaining a deep love and passion for both her art and athletics. This is the third episode in season two of Inner Drive which follows the highs and lows of some of Ireland's best sportspeople. Inner Drive in partnership with Allianz, proud sponsor of Paralympics Ireland. #StopTheDrop

Bf Barry says of summer starting, revving up, especially for co-host Kerry: Barry says “hanging out and hanging in” But as we greet the summer season, we're hanging out with someone Kerry came across through Steph McCoy of the fashion, style, and inclusion platform "Bold Blind Beauty". Of course, it's about the representation which I think is very important, also for the generations that are younger than me, but also because I think we should celebrate these different perspectives. And I also hope to show other travelers with low vision, that it's us who get to share this perspective with the sighted travelers and I think there's a cool aspect in that. Marie Elise joins us on Outlook this week to talk travel, the value of experiencing the loveliness and power of the planet by making use of all our available senses, and adapting to the shifting sands of genetic vision degeneration. Whether it's chickens, hummingbirds, or horses, Elise wanted to be a veterinarian growing up and now wants to share her message of experiencing the sound of a hummingbird and not just seeing it, and joins us from South America with the sound of those chickens outside the door. She describes her special connection to horses and the trust it takes to ride with fading sight, but the benefits of emotional regulation for a deeper connection and something she could apply to life going forward were helpful for coping with all of it. She says of her life travels, as she's worked to befriend the anxieties that developed in her 20s as the realities of her Stargardt's blindness became clearer: “I feel like that if you live in another country, that culture and that country becomes a part of you. It really has helped me develop as a human.” So whether it's growing up amongst the bicycles in the Netherlands, studying Spanish in Spain after high school, or her time in Argentina, Marie has a dream going forward: Of course, it's about the representation which I think is very important, also for the generations that are younger than me, but also because I think we should celebrate these different perspectives. And I also hope to show other travelers with low vision, that it's us who get to share this perspective with the sighted travelers and I think there's a cool aspect in that. Marie has a blog “Beyond My Blur” where she shares her own perspective on the places she's been lucky to get to experience and how to do this, with the full spectrum of senses, more fully: https://beyondmyblur.com

In this episode of Inner Drive, Paralympian Orla Comerford sits down with Colm Boohig to discuss being diagnosed with Stargardt disease as a child and her attitude to progressively losing her sight while also maintaining a deep love and passion for both her art and athletics. This is the third episode in season two of Inner Drive which follows the highs and lows of some of Ireland's best sportspeople. Inner Drive in partnership with Allianz, proud sponsor of Paralympics Ireland. #StopTheDrop

Send us a textBert Henderson shares his remarkable hockey journey from BCHL champion to WHL captain to playing professionally in Japan, before becoming a coach and hockey dad with sons following in his footsteps.• The importance of compete level in practice and how championship teams are built through daily intensity• Transition from wanting to be an offensive defenseman to understanding his true strengths and value as a player• Decision to play professionally in Japan despite NHL aspirations, leading to an eight-year international career• Experience coaching in the BCHL as GM/head coach while balancing family responsibilities• The emotional journey of watching his son play for his former WHL team, the Kelowna Rockets• Coaching philosophy focusing on development, accountability and play away from the puck• The inspiring story of his youngest son playing competitive hockey despite being legally blind with Stargardt's disease• How today's game values different player types, with power forwards becoming increasingly rare but valuableWhether you want to improve as a player, coach, or hockey parent, focus on compete level, character development, and maintaining joy for the game.

Technology is rapidly reshaping the world, but for people with disabilities, it’s doing something even more profound - it’s redefining what’s possible. Explore how cutting-edge assistive technologies are breaking barriers, restoring independence, and revolutionizing the way people navigate the world. Sam Seavey, creator of “The Blind Life” YouTube channel, shares how AI-powered tools are game-changers for people with vision impairments. And former stuntman Jonathan Goodwin introduces Kim-e, a self-balancing mobility robot redefining independence for wheelchair users. Suggested episodes: Revealing Our Blind Spots About Blindness MasterChef winner Christine Ha and poet Edward Hirsch on turning blindness into brilliance Hearing every color, feeling every earthquake: Life as a cyborg Stunt performers David Holmes and Jonathan Goodwin on life after paralysis GUESTS: Sam Seavey: founder of “The Blind Life” YouTube channel, where he provides tips, reviews of assistive devices, and interviews with visually impaired community members. Diagnosed with Stargardt disease at the age of 11, Sam has dedicated 30 years to researching and understanding assistive devices. Among the inventions Sam mentions during this conversation are Ray Ban Meta AI glasses, the Be My Eyes app, the WeWalk smart cane, and braille tablets Jonathan Goodwin: a retired stunt performer, screenwriter, keynote speaker, and hypnotherapist. In 2021, he was paralyzed while rehearsing a stunt for America's Got Talent: Extreme. He has been exploring a new piece of assistive technology called Kim-e, a self-balancing personal mobility robotSupport the show: https://www.wnpr.org/donateSee omnystudio.com/listener for privacy information.

March 21, 2025. Professor Michel Michaelides, a world-renowned clinical researcher for inherited retinal diseases at Moorfields Eye Hospital and University College London, talks to host Ben Shaberman about the extraordinary vision improvements for young blind children receiving gene therapy for Leber congenital amaurosis 4 (LCA4). Professor also talks about emerging therapies in clinical trials for X-linked retinitis pigmentosa and Stargardt disease.

Dr. Shankar Musunuri, Chairman of the Board, CEO, and Co-Founder of Ocugen, is developing gene therapies for rare blindness diseases like retinitis pigmentosa and Stargardt disease, which have significant unmet medical needs. The modifier gene therapy approach aims to reset homeostasis and create a healthy environment for photoreceptors to stabilize vision loss. Ocugen is also working on a gene therapy for dry age-related macular degeneration, which has the potential to address the late-stage geographic atrophy form of the disease. Shankar explains, "Vision is the most important part for all of us. Many years ago, when we founded Ocugen, it was based on targeting the ophthalmology disease area. We looked into many blindness diseases related to the back of the eye/retina. We have diseases such as AMD- and many people get into that – age-related macular degeneration. Then, there are diseases that are inherited in nature, like retinitis pigmentosa and Stargardt disease. A lot of these diseases impact many families globally. Therefore, our passion for patients has driven that. If there is a significant unmet medical need, we want to take that as a challenge and provide solutions for patients and provide that hope." "There are two rare blindness diseases. One is retinitis pigmentosa. There are about two million people globally who struggle with it. About 300,000 patients are in the US and EU. Effects in about 100 genes can cause retinitis pigmentosa. With our modifier game-changing gene therapy technology, potentially, our one product, which is currently going through a Phase 3 clinical trial, can target this entire population, rather than building or developing 100 products with the traditional gene therapy gene. The second inherited retinal disease we are working on, Stargardt, affects about 100,000 patients in the US and EU. Similar to RP, there are no therapies today to treat these patients' significant unmet medical needs." #Ocugen #CourageousInnovation #GeneTherapy #ModifierGeneTherapy #BlindnessDiseases #RetinitisPigmentosa #GeographicAtrophy #Stargardt ocugen.com Listen to the podcast here

Dr. Shankar Musunuri, Chairman of the Board, CEO, and Co-Founder of Ocugen, is developing gene therapies for rare blindness diseases like retinitis pigmentosa and Stargardt disease, which have significant unmet medical needs. The modifier gene therapy approach aims to reset homeostasis and create a healthy environment for photoreceptors to stabilize vision loss. Ocugen is also working on a gene therapy for dry age-related macular degeneration, which has the potential to address the late-stage geographic atrophy form of the disease. Shankar explains, "Vision is the most important part for all of us. Many years ago, when we founded Ocugen, it was based on targeting the ophthalmology disease area. We looked into many blindness diseases related to the back of the eye/retina. We have diseases such as AMD- and many people get into that – age-related macular degeneration. Then, there are diseases that are inherited in nature, like retinitis pigmentosa and Stargardt disease. A lot of these diseases impact many families globally. Therefore, our passion for patients has driven that. If there is a significant unmet medical need, we want to take that as a challenge and provide solutions for patients and provide that hope." "There are two rare blindness diseases. One is retinitis pigmentosa. There are about two million people globally who struggle with it. About 300,000 patients are in the US and EU. Effects in about 100 genes can cause retinitis pigmentosa. With our modifier game-changing gene therapy technology, potentially, our one product, which is currently going through a Phase 3 clinical trial, can target this entire population, rather than building or developing 100 products with the traditional gene therapy gene. The second inherited retinal disease we are working on, Stargardt, affects about 100,000 patients in the US and EU. Similar to RP, there are no therapies today to treat these patients' significant unmet medical needs." #Ocugen #CourageousInnovation #GeneTherapy #ModifierGeneTherapy #BlindnessDiseases #RetinitisPigmentosa #GeographicAtrophy #Stargardt ocugen.com Download the transcript here

Dr. Shankar Musunuri, Chairman of the Board, CEO, and Co-Founder of Ocugen, is developing gene therapies for rare blindness diseases like retinitis pigmentosa and Stargardt disease, which have significant unmet medical needs. The modifier gene therapy approach aims to reset homeostasis and create a healthy environment for photoreceptors to stabilize vision loss. Ocugen is also working on a gene therapy for dry age-related macular degeneration, which has the potential to address the late-stage geographic atrophy form of the disease. Shankar explains, "Vision is the most important part for all of us. Many years ago, when we founded Ocugen, it was based on targeting the ophthalmology disease area. We looked into many blindness diseases related to the back of the eye/retina. We have diseases such as AMD- and many people get into that – age-related macular degeneration. Then, there are diseases that are inherited in nature, like retinitis pigmentosa and Stargardt disease. A lot of these diseases impact many families globally. Therefore, our passion for patients has driven that. If there is a significant unmet medical need, we want to take that as a challenge and provide solutions for patients and provide that hope." "There are two rare blindness diseases. One is retinitis pigmentosa. There are about two million people globally who struggle with it. About 300,000 patients are in the US and EU. Effects in about 100 genes can cause retinitis pigmentosa. With our modifier game-changing gene therapy technology, potentially, our one product, which is currently going through a Phase 3 clinical trial, can target this entire population, rather than building or developing 100 products with the traditional gene therapy gene. The second inherited retinal disease we are working on, Stargardt, affects about 100,000 patients in the US and EU. Similar to RP, there are no therapies today to treat these patients' significant unmet medical needs." #Ocugen #CourageousInnovation #GeneTherapy #ModifierGeneTherapy #BlindnessDiseases #RetinitisPigmentosa #GeographicAtrophy #Stargardt ocugen.com Listen to the podcast here

While participating at the National Federation of the Blind National convention this year with my colleague and friend, Sheldon Lewis who also is a former guest here on Unstoppable Mindset, we had the opportunity to meet Amy SP Wilson. Amy is the founder and leader of the Safety Positive Foundation. Amy began losing her eyesight at the age of ten years old due to a condition known as Stargardt's. this disease can best be described as macular Degeneration in juveniles. If you want to know more about Stargardt's just listen into my conversation with Amy. Amy has always been quite interested in personal safety. She also has been quite a physical person starting with wrestling with her cousins to later becoming the first female wrestler at the Missouri School for the Blind to later becoming part of the inaugural women's Judo team of the United States Association of Blind Athletes. Amy went on to college where she obtained a Bachelor's degree in Psychology. After a time and some life challenges Amy will tell us about she decided to go back to college to obtain a second Bachelor's degree in Social Work. She decided to get this second degree because she wanted to help persons with disabilities in the United States. In 2023 Amy founded Safety Positive Foundation to teach blind persons about self defense. Her approach is by no means all about being physical. She will talk with us about self awareness and self advocacy, two aspects she feels must be part of the psyche of everyone who wishes to take charge of their own life. About the Guest: ael Hingson ** 00:00 Access Cast and accessiBe Initiative presents Unstoppable Mindset. The podcast where inclusion, diversity and the unexpected meet. Hi, I'm Michael Hingson, Chief Vision Officer for accessiBe and the author of the number one New York Times bestselling book, Thunder dog, the story of a blind man, his guide dog and the triumph of trust. Thanks for joining me on my podcast as we explore our own blinding fears of inclusion unacceptance and our resistance to change. We will discover the idea that no matter the situation, or the people we encounter, our own fears, and prejudices often are our strongest barriers to moving forward. The unstoppable mindset podcast is sponsored by accessiBe, that's a c c e s s i capital B e. Visit www.accessibe.com to learn how you can make your website accessible for persons with disabilities. And to help make the internet fully inclusive by the year 2025. Glad you dropped by we're happy to meet you and to have you here with us. Well, hi everyone. I am your host, Mike hingson, and welcome to another episode of unstoppable mindset where inclusion, diversity and the unexpected meet. And the reason it's worded that way people still ask me why I say that. The reason it's worded that way is that when we talk to diversity people, they'll talk about race, gender, sexual orientation and so on, and they never talk about disabilities. So unfortunately, the ship has mostly sailed when it comes to including disabilities in diversity, no matter what they say. So we won't let them do that with inclusion, which means it's inclusion diversity and the unexpected. And today we get to deal with a lot of all of that. The unexpected is anything that doesn't have anything to do with inclusion or diversity. But today, we do get to talk about inclusion a lot in some esoteric and maybe not so esoteric ways. Our guest today is Amy SP Wilson, and I just discovered, as Amy showed me, if you were to ask your smart speaker, like my Amazon Echo, who is Amy SP Wilson, it will tell you that she is the CEO of the positive safety positive foundation. We're going to talk more about that, so we'll get there anyway. Amy, welcome to unstoppable mindset. We're glad you're here. Wonderful.   Amy SP Wilson ** 02:45 Thank you for having me. It's an honor and a privilege, and   Michael Hingson ** 02:49 it's nice to know that the echo knows your name.   Amy SP Wilson ** 02:53 Yeah, I'm still kind of flabbergasted that that's a thing, but definitely gives you some street cred, I guess.   Michael Hingson ** 03:02 Yeah, it probably means that there, there aren't, well, there certainly aren't very many. Amy SP Wilson, so that works, yes, well, why don't we start the way I kind of really love to. Why don't you tell us, sort of about the early Amy growing up and some of that sort of stuff.   Amy SP Wilson ** 03:21 So in my younger years, I was born and raised in the state of Missouri, and have what I consider a biker family. We did a lot of traveling on motorcycles. I was riding my own dirt bike at the age of four, and so really tomboy at at heart, but loved, you know, wrestling and fighting with the cousins. And at the age of 10 is when I was diagnosed with star guards, and that put me on a different path, because at the age of 10, my dream was to be a motorcycle mechanic and join the Navy. And at the time, I did not have any expectations that a blind person could do either. So it really put me on a different trajectory of what I thought my life was going to going to be like, and I, of course, went on with school and and that sort of business, but I loved wrestling so much that I became the Missouri School for the blinds First Lady wrestler. And that led me into being part of the United States Association of Blind Athletes, where I was on the first women's judo team that they had, and so just got real passionate about personal safety and different ways. But due to my eye condition, I couldn't take hits to the head, and so there went my martial arts career this. I'll just say, or so I thought, and led me into going to college and get my my first bachelor's degree in psychology and and so on. But I I have people tell me that apparently I have been pioneering new things my whole life. And when I have to talk about myself and talk about I was the first to do this and first to do that, yeah, it's a very sobering reminder of those steps that I've make it in my life. Right?   Michael Hingson ** 05:35 Reading your bio, it says that because of star guard, you weren't at some at one point, able to continue kind of dealing with martial arts. What did star guard specifically have to do with that?   Amy SP Wilson ** 05:47 So it it affects my retina, and I noticed the more hits that I was taking to the head and, you know, being thrown I was having more cloudy spots in my vision, and when I stopped doing those things, it, it, you know, significantly reduced the amount of things I wasn't able to to see. And so that's, that's how that played into that well,   Michael Hingson ** 06:19 tell me a little bit about what star guards is. I'm not sure that everyone listening or watching will be familiar with   Amy SP Wilson ** 06:26 it, correct? Yes. So star guards is a juvenile form of macular degeneration. So you hear of, you know, your grandparents, or you know, maybe you're a person of experience, as I like to say, in your in your later years. And you know, hear about people getting macular degeneration. I essentially just got macular degeneration at the the age of 10. So little bit of a flip. And of course, again, being a first, I was the first person in my family to have any kind of blindness, low vision, and so it was. It really shook everything   Michael Hingson ** 07:06 is star guards, a genetic kind of situation.   Amy SP Wilson ** 07:12 So I learned that the only way that a person can get star guards is essentially by your parents getting together. It's not a medication defect, which is what they originally told my mother. So she carried a lot of guilt with that. And when I went to get seek a different doctor, he had me do some I guess genetic counseling is what they called it, because I had concerns of my son having it. And they were like, no, no, it doesn't work. And they explained it. I was like, well, that had been helpful in my younger   Michael Hingson ** 07:50 just sort of the right combination of things getting together that brings it on. Exactly. Yeah. Now, where do you live today? I live in the great Show Me State. Ah, so you're still in Missouri? Yes, I've   Amy SP Wilson ** 08:05 moved to a couple other states. I spent a year in Alaska, where my son was born. I lived in Indiana for a little bit. I pass on that, and fortunately, I was able to come back to to Missouri.   Michael Hingson ** 08:20 So we're in Missouri. Are you, uh, close   Amy SP Wilson ** 08:23 to Kansas City area? Okay, about about in that area, but I like to, I like it because I can take the train back and forth between Kansas City and St Louis. So, yeah,   Michael Hingson ** 08:34 well, trains are very useful things to have around. I when I lived on the East Coast, would use the train a lot. And of course, going from New Jersey into New York, we had New Jersey Transit and other things that we had a lot of train stuff. But out here, where I live now, there is a train that stops here once, at 430 in the morning. If I want to go to San Francisco, I'm not going to do that on the train, I don't think, because you actually have to go to Los Angeles and then get another train to go to San Francisco, because the train that comes from Los Angeles stops here, and then, I guess, goes east. So, oh, well, one of these days, maybe there'll be more trains and more mass transit, and that'll be a good thing. Exactly.   Amy SP Wilson ** 09:19 I know in Europe, trains are used very heavily, and people that come over here are constantly surprised that we don't have more sufficient trains. And so hopefully, like you said, with time we'll we'll get some more transportation going. There's   Michael Hingson ** 09:36 a big argument and a brouhaha going on out here right now because Los Angeles wants to create a gondola system to go from downtown LA the train station to Dodger Stadium and stop along the way. And there are people who are saying, no, no. Because you're not going to get that many people on it, it's just not going to be worth the cost. So it'll be interesting to see how that all shakes out. I do agree that if you're going to do that, you have to have a lot of people using it, and you have to be able to transport a lot of people. So it will be interesting to see how that works out.   Amy SP Wilson ** 10:22 I can very much agree with that.   Michael Hingson ** 10:25 Oh, life goes on, right? That it does. So you went to, yeah, go ahead. I   Amy SP Wilson ** 10:32 said. We've heard the same debate here in Missouri about different, you know, options for trains. So, yeah, it's always an ongoing conversation.   Michael Hingson ** 10:39 When we first moved to New Jersey, we learned that with the Americans with Disabilities Act, they were finally catching up, if you will, to doing something. And the something where we lived in Westfield was to make the train station accessible and access to the train to be accessible. And what that meant was that they actually had to build a platform and ramps up to the platform so that a person in a chair, for example, like my wife, could transfer straight across and roll onto the train. Because before the platform was raised, the trains have these big, huge, high steps built into them. Each step is like 18 inches tall and you've got three steps to go into the train. Well, you're not going to really do that in a wheelchair. And there was major opposition from people in Westfield to putting in the ramps, putting in the platforms, because they said, well, but this is going to slow us down if we have to go up the ramps and can't just run to the train and jump on the train. Why don't you just have somebody at every station who will lift people in wheelchairs onto trains? Yeah, that's gonna really work, right?   Amy SP Wilson ** 11:50 Yeah, that's not, not feasible,   Michael Hingson ** 11:54 no. And it didn't, and the argument didn't hold, fortunately, and the the platforms were built and, and, and the reality is it didn't jeopardize anybody, other than maybe make them arrive 30 seconds earlier, rather than being so lazy. But, ah, the arguments that people have. But it'll be interesting to see how the train thing works out, because they do need to have more mass transit out   Amy SP Wilson ** 12:18 here. Absolutely, 100%   Michael Hingson ** 12:21 so you went off to college, and what did you do in college,   Amy SP Wilson ** 12:27 college stuff, but because I was unfamiliar with how to really maximize your college experience. I didn't really, you know, have a plan. Once I got done with college, all I knew was I needed to go to college. Go to college, yeah, and, you know, because that's, that's what's going to make your life better. Okay, I can, I can follow that plan. But what's the plan after, like, nobody, nobody had that. They just knew, you know, go to college. Oh, okay. And so I tried to get some, some different jobs, unsuccessfully. And then I ended up getting married and moving to Alaska, and so did some some different jobs up there. And through my experience of being married during that time, I also shared with people that I'm a domestic violence survivor, and it's one of the things that I really wish the disabled community was having more conversations about this, because there I know that I'm I'm not alone, and when I share it, I always have people come forward and Me too, me too. And I'm like, Yes, like, we, can we, you know, support one another. And fortunately, I was only in that marriage for for three years and and got out of it. Spent a couple more years in Indiana, but then when I moved back to Missouri, I learned about some blindness consumer organizations and and started getting involved with those. I also, at the same time, heard, heard about a self defense program for the blind. And I'm like, wait a minute, there's something you know that that works for us. So I jumped on it, became an instructor, became very involved in the that particular organization. And due to some some different circumstances, realized that that was not a healthy environment, and spent probably a year not doing that. But then had some people contact me to get another self defense program going, and I'm like, All right, let's do it. So yeah, that's a. Um, but I've, I've taken in that time of me teaching self defense, I also worked with my local dojo and would help with my son's classes. So I've definitely got the personal safety self defense experience down at this point, I feel like   Michael Hingson ** 15:24 so. So in other words, maybe if there were violent situation today, you could turn the tables and and be the one to beat up the other guy.   Amy SP Wilson ** 15:33 So that's you know, because I will share that, that that is you. That is a common thought.   Michael Hingson ** 15:43 I understand, yes,   Amy SP Wilson ** 15:46 however, in june 2019 I experienced sexual assault by somebody. And it's really what got me to tell people that personal safety you need to be proactive about it, especially in the disabled space. It is so very vital in that realm, yeah, but   Michael Hingson ** 16:11 yeah, there's only so much you can do. And you're right. It's, it's a matter of being, as you say, personally safe. And you know, it's, it is so important, and I think so many people, especially I think a lot of blind people I know about aren't as aware of their surroundings as they need to be, even just in in walking, even if it's not a a safety issue, that is where you're endangered from another person, but just being aware of your surroundings and being able to travel. I remember living in Boston and at the time, and I don't know if it's still the same or not today, but Boston or Massachusetts, had the highest accident rate per capita in the country, and this was back in the late 1970s into the early 1980s and I knew it, and it, it was just one of those factoids, if you will, that helped me stay really aware. So whenever I cross the street, I really made sure that the traffic was going the way I wanted to go, and I listened extremely carefully to what the traffic was doing around me, because any moment a car could come whizzing around a corner, nobody else would have seen it, and if I weren't listening for it, I might not have been able to judge appropriately whether it was safe to go or how fast I had to go to get across the street. So the reality is that we really do need to be situationally aware. And I think it's not just true for people who happen to be blind, but but it is especially true that we need to work on that and be aware of our surroundings   Amy SP Wilson ** 18:01 100% 100% that that is like, one of the first things we started offering right out the gate when it came to safety positive, is having discussions about personal safety topics, because it makes you more situationally aware. I know that. You know now that I have the mindset of being proactive about my personal safety, I am so keyed up on situational awareness that I sometimes freak out people, because I'm like, pay attention. Over there, pay attention. They're like, how? And I'm like, well, the more you learn about safety education, anything in the personal safety realm, it just helps you to become more situationally where, so you respond faster. You don't have to sit there and go, Well, what was that that I learned? No, no, that's not what we we want you to have. We want you to be, you know, kind of studying up on it so much that it becomes second nature for you?   Michael Hingson ** 19:00 Yeah, all too often we we learn something, and then we just have we, we sort of memorize the lesson. And we don't memorize what it is we really need to do. It isn't what, what did I learn? You need to get to the point where it's second nature, where it's just part of you, whether it's situational awareness or or a lot of things, even good musicians,   19:24 yes, you know,   Michael Hingson ** 19:26 do what they do because they've it's become second nature, yes.   Amy SP Wilson ** 19:30 And we, we talk about that, you know, it's, it's a journey you're not going to jump from, you know, being a beginner, you know, car guitar player, kind of like your manual musician, to being able to play on a, you know, stage with 5000 people overnight, it does not, you know, it is a process. And so, you know, giving, tell, you know, reminding people to give themselves grace. And it is a work in progress. So you know, you there's going to be deja mess. Up, but that's okay, you know, be do better tomorrow, on, on all those different situations. The   Michael Hingson ** 20:07 more you practice it, though, and the more you work on looking at lessons and looking at the things that you do and practice making them second nature, the easier it becomes. But it is a muscle the mind that you have to develop.   Amy SP Wilson ** 20:25 Yes, we, we basically tell people your, you know, your most important tool is your mind. So many people want that quick fix of having the pepper spray or, you know, this side of the other, and it's like, no, no, your mind is your most important, you know, tool in your arsenal, so take, take care of it. It's your, it's your biggest investment in life, yeah,   Michael Hingson ** 20:48 and it's and it's the most important one, and it will do so much more for you. But the more you truly use it, the easier it becomes to use. But you've got to make that effort to make that happen, yes, so you got through college, you got, I think, what a degree in psychology, as I recall. And you said you went and worked on various jobs, and I gather nothing really struck a nerve.   Amy SP Wilson ** 21:15 No, you know, I, I actually went back to school and got a second bachelor's degree in social work because I knew I wanted to work with the disabled community, and so I of course, was advocating in my own classes for disability rights and driving my fellow students crazy. But I'm like, we're in social work, and we're not learning about disabilities. This is madness. You're going to be, you know, working with at least, you know, half the people have some sort of disability in some fashion, and we're not even having a conversation about it. So, but I guess I actually, before I got real involved with personal safety here, more recently, in the last couple years, I actually was a Mary Kay consultant for a while, and had had some fun with that. And it's a great, great company. They're they're real supportive. They call it kind of the pink bubble. But I learned a lot about marketing and sales through that. So I constantly am telling my team, I'm like, Yeah, that's a Mary Kay thing. That's America. But they've been around for so many years. There's obviously, like, I said, a method to their madness.   Michael Hingson ** 22:31 They kind of know what they're doing, yeah,   Amy SP Wilson ** 22:34 yeah, yeah. They've, they've got systems down. So yeah.   Michael Hingson ** 22:37 So when did you get your social work, bachelor's degree. When did you graduate with that 2016 Okay, so that was eight years ago, and then you you did other things and so on. But eventually, what, what caused you finally to form safety positive foundation.   Amy SP Wilson ** 22:58 I I essentially got madder than a hatter because we weren't offering choices. It was just this one self defense program, this one self defense program. And I'm like, Well, what about teaching people to advocate for themselves, or having discussions or this or that? Like and I kept getting shot down time and time again from from the leadership in those organizations, and I and I actually had a couple people who pulled me aside and really strongly encouraged me to start my own non for profit. And I was like, Excuse me. Like me be the leader. Uh, I don't, I don't. I don't know how I feel about this, um, but luckily they, you know, they convinced me. Had other people convinced me. And I just, it really is a big passion of mine to just make sure that the blind community has as many personal safety choices as everybody else does, because historically, we have not. So   Michael Hingson ** 24:05 you're saying some of the major consumer organizations kind of discouraged it at first. I   Amy SP Wilson ** 24:14 they were from elsewhere. Was from elsewhere. I wouldn't say some of them, you know, I'm not going to throw no shade on the major groups,   24:21 no, no, no.   Amy SP Wilson ** 24:22 But it was the companies that were teaching self defense got really only focused on just, you know, hands on self defense. And I'm like, and it was either, you know, release or break body parts. And I'm like, not everybody's comfortable breaking body parts like we need some choices. We need to teach people to advocate for themselves, to speak up. That is the like. The bigger thing that I have found is people not understanding the power of of their words and their language to, you know, get themselves out of situation. And it's usually a freeze response, and I know because I was personally guilty of that for many years. And so yeah, I'm I'm thrilled that I don't struggle with that nowhere near as much as I used to, but I can recognize that it is a huge need within our community.   Michael Hingson ** 25:20 So when did you actually form the foundation?   Amy SP Wilson ** 25:25 March 3, 2023 was when we officially launched safety positive foundation.   Michael Hingson ** 25:31 So it's fairly new. Yes, well, a year and about a year and a half old.   Amy SP Wilson ** 25:39 Yep, yep, we're still baby.   Michael Hingson ** 25:43 That's okay. Do you find that that men and women are interested in personal safety and so on, or is it just women or just men? Or what we   Amy SP Wilson ** 25:54 have both? I'd say at our events, it's half and half, I get more men volunteering to to work behind the scenes on stuff, because personal safety is primarily a male dominated profession, which makes me kind of a odd woman out. But you know, we are not for profits. I'll take the help wherever I can get.   Michael Hingson ** 26:17 Sure, well, even if you were for profit, it would make sense to do that. But yeah, I hear you, yes, yeah. So exactly, what does the safety positive foundation do?   Amy SP Wilson ** 26:32 So we offer, again, a variety of choices for personal safety. We have what we call our safety positive guide that gives our blind community, 24/7, access to training and resources. And so that's a resource all by itself, because we put in there motivational information resources, asking discussion questions. But then we also have chapters in our guide to where people can take our courses, where they can go from ProAct or from reactive to proactive on their personal safety. We also have in that guide links to what we call our weekly tea times, and that's probably one of our most popular services, and that's where we're having the space for discussions on personal safety. Each month we do a different topic, and we have also added verbal craft, which is a self advocacy and assertiveness communication training. And we've actually had that training from the very beginning, because, again, I knew, in my experience, that people really needed to learn that that advocating piece, like we're told to advocate, but never given a formula. And we finally have a formula with with verbal craft. So it makes me very excited. And then in just this year, when we started getting into our second year, we shifted away from focusing on the psychological safety to that physical safety aspect, and I became the first blind woman pepper spray instructor with saber so that was exciting. And then we created our own hands on self defense program that focuses on the fundamentals of self defense. We created this course because we knew people needed some pieces. So if they wanted to go take a, you know, martial arts class on a consistent basis, or if they wanted to go take that self defense class, they would have some language to talk with the instructors. And this is how you can assist me. And so, yeah, those, those are pretty much what we offer, but, and we're partnering with with other companies organizations to bring in more resources and training for our community. So like I said, it's only been a year and a half, but yeah, we're bringing it when it comes to the choices. Tell   Michael Hingson ** 29:13 me more about verbal craft, what, what that is all about, or how does that work? So   Amy SP Wilson ** 29:19 at the core, verbal craft was developed as a crisis de escalation communication training, and of course, for the purposes of the blind community, we realized that it also helps with teaching you self advocacy and assertiveness in your communication. So you know, say, somebody comes up and, you know, grabs your arm trying to assist you. Verbal craft has a, you know, we we work with you to develop to personalize your own formula. We also have a verbal craft club where people can come in and practice. This maybe a scenario and and get better at at their skills. I know for me when I first, because I did not even know a verbal craft again, I went to hearing about all the you know, need to advocate for yourself, and I'm like, How do I do that. But it was in November of 2022, that I I finally was able to take verbal craft. And since then, I have, I've discovered that I am even you know better at it. I don't, I don't freeze or fawn as much. And when people are trying to help me, or when people are trying to cross my my boundaries in those different ways.   Michael Hingson ** 30:48 I remember many times being in New York City or in other large cities, but New York especially, wanting to cross the street and go a particular way, waiting for the traffic flow to be going the way I wanted, and making sure that it's going the way I wanted, somebody will come up and grab me. Oh, let me. Let me help you. And of course, the problem is they don't even know for sure which way I want to go correct, which really makes life fun. And so they'll grab me and I go, No, hold on a minute. First of all, I'm really good. Do you know why I'm just standing here? No, you're, you're, obviously, you need help. No, let me explain Ricky, you know, but it is so unfortunate that people make these assumptions. And it happens all too often. It goes back to the basic view of of blindness that that people have, which is that we really don't know what we're doing and we can't really do it ourselves, that you need to have eyesight to do it, which is why earlier this year, at the National Federation of the Blind convention, I crafted the resolution that was adopted that says we need to stop using the term visually impaired and go to blind and low vision. And I mean, there are other terms, but the real issue is to get rid of the concept of impaired, which is what the professionals brought to the field many years ago, which was such a disservice.   Amy SP Wilson ** 32:18 Yeah, I can, I can agree, the word impaired is not the greatest term we want to be be using in that realm. And yeah, in in all my teaching of of self defense, the people coming up and grabbing is the number one frustration that that we deal with as a as a blind community, and it's the reason that people want to learn self defense, because they want to be able to figure out, how do I get myself out of this situation? And that's where you know verbal craft is that that first step of, if you can talk them down, that's that's the ideal situation. And then, of course, we're going to be bringing more choices of they don't want to do that. That's okay. We got some other skills. Yeah, yeah.   Michael Hingson ** 33:05 Well, and it's important to really learn to use all the skills that we have available, which is, of course, something that gets back to the whole issue of using your mind. And that's just something that all too often, well, if I were really abusive, I'd say that's something that every politician should learn to do, is use their mind, but they haven't learned that yet. So that's another story. But, oh, that was That was mean, but, but the reality is that that we need to learn to listen better than we do.   Amy SP Wilson ** 33:40 Well, I mean, the common thing is you have two ears and one mouth, because you're supposed to do twice as much listening, and that also plays a lot into the situational awareness is, you know, sometimes you have to just stop talking so you can pay attention to what, what is going on on around you, right? I know, like with my friends and my team. They know if I'm stopped talking, they need to start paying attention themselves, because I don't usually stop mid sentence. I'm like, wait a minute, what? You know, I start kind of perking my ears and, yeah, yeah, yeah. And we've got, we've created different code words and stuff like that to help, you know, everybody be on the same page, to support people in that, that journey too   Michael Hingson ** 34:21 cool. Well, it's important. So what are the basic core values, the the core things that go into safety, positive foundation and that kind of guide what you do.   Amy SP Wilson ** 34:33 So we have five core values. One is safety, of course, um, innovation, because we are, I've been told numerous times we are pioneering new paths with what we're we're bringing in, so that's and we're always looking for other other things that the community needs to bring in as well. We also have potential as one of them, because. Do believe in the potential of of people in general, and then we also have agency because we want we strongly believe in people having choices when it comes to their personal safety and authenticity. Is our last one, and this one, it it took a little bit to get everybody on board, because I am very authentic myself. And so they were like, we're not talking about you. And I'm like, I know that like but you know, people feel safer when they can be them, their authentic selves, and that's what we want to support, is you know you getting comfortable with you and knowing that you have those you know, choices, potential and and those things. So we, we strongly believe in our core values   Michael Hingson ** 35:55 and and having the ability, or learning to have the ability to analyze who you are, what you do, what you're doing, and when necessary, make changes or to reaffirm that what you do is a good thing, whatever it is.   Amy SP Wilson ** 36:11 Yes, yeah. So, you know, sometimes people need that permission to, you know, change their mind or be on the path that they're they're being on on our on our tea times. I am very well known for telling people, does anybody have questions, comments, concerns or emotional outburst? And because I want to give people that space to you know they need to just yell it out. Yell it out. We're here to support you. Yeah,   Michael Hingson ** 36:40 sometimes that's important and necessary to do absolutely. Why is the foundation called safety positive Foundation?   Amy SP Wilson ** 36:50 We created that name. And actually I created that name because I got tired of the fear mongering that was going on with the self defense organizations and programs that already existed in the blind community. In fact, I had been told one time that I needed to be more negative and in pitching, you know, and trying to scare people. And I'm like, I refuse. I will not do that. Our community is already scared enough. And No way am I, you know, going to hammer home all the the statistics and stuff like that, people, people already have fear. And so in that I played around with words, of course, I have SP in the middle of my my name. And so I was like, Well, you know, safety positive, like, we're all about safety. We want to be positive. And then one of my board members was like, well, we need to add, you know, foundation, because, you know, we're building a foundation here. And I'm like, there it is, safety, positive Foundation was born just based off of the collection of all that. There   Michael Hingson ** 38:14 you go. And and it works. How is it different from mother, self defense and similar kinds of organizations. Because I'm I'm sure that you feel that it is definitely different. Yes,   Amy SP Wilson ** 38:29 yes, we have created it different from the beginning. Because when we launched, we focused on psychological safety, it people would ask me, well, where's the hands on? I'm like, Nope, we're not, we're not doing it yet, because psychological safety needs to be that first step on your on your journey, especially if you have a lot of fear when it when it comes to personal safety. So that was the the mindset that we intentionally chose. The other thing that I would say that probably differentiates us is, of course, the choices and that as of right now, we don't have it to where you can sign up, pay a bunch of money and become an instructor in our program we're not interested in making making money off of that. We are interested in bringing people in as instructors at some point, and we've talked about doing that next year, but we want to be very mindful of how that approach works, because people have gotten trained in other programs, and then they go off and do their own thing, and we're like no, because we want to make sure that the curriculum you were teaching is safety, positive focus. We don't want people running off and trying to fear monger like they had been taught. Before. So that's that's our method to our madness.   Michael Hingson ** 40:05 Well, I may not know that the whole idea of fear is a subject that is near and dear to me, because recently, I published a new book called Live like a guide dog, true stories from a blind man and his dogs about being brave while becoming adversity and moving forward in faith. And the whole idea behind the book is to get people to understand that they can learn to control fear and that you don't need to have fear forced on you. And the reality is that all the negative aspects of fear that you've been talking about is what promotes fear. And I picked on politicians before, but that's what they do. They promote fear to a very large degree themselves, and promoting all this fear just makes people negative. They make it makes people be mistrustful. And the fact of the matter is that if we really learn to understand fear, which also is involved in developing the mind, as we've been talking about. But if we really focus on understanding fear, what we learn is that we can control fear, and that fear can be a very powerful tool to help us. So it isn't about not being afraid, it's about using that fear to focus and not let it, as I would say, blind or overwhelm you.   Amy SP Wilson ** 41:24 Yes, again, 100% agreeing with you on that, the more that you can. I'd say they're, they're, say, lean into the fear and make it your friend that you know that that helps so much. It's also part of that muscle memory of going, Okay, I don't need to be fearful in this situation. And we actually talk about that in our verbal craft training, how the brain, your brain state works when you know something happens to you, and how you can move through that   Michael Hingson ** 42:04 well, and that's exactly right. The issue is moving through it. I mean, just something happens. I mean, I was in the World Trade Center on September 11, and something happened. Right? So there's a lot to be afraid of, but if you prepare and learn to control your own mind, then that fear becomes a very powerful tool to help you focus and learning to listen to that inner voice is one of the most important things that we can ever do in our lives.   Amy SP Wilson ** 42:38 Yes, I I've actually used my personal safety training to help me to heal from some of my past traumas. And, you know, even to the point where practicing certain techniques that had been, you know, done on me to how do I get out of this? And that really, you know, at the, you know, the first few times, oh, yeah, anxiety was real high. And sure, the more you lean into it, the more you work through it, it can be helpful. The unfortunate part is, for some situations, like what you went through in 911 Ain't nobody preparing you for that   Michael Hingson ** 43:17 well, but not directly, but what you learn? But what what you learn? So like with me in September 11, I learned all about emergency evacuations. I learned all about where things were in the World Trade Center. And I learned just and I mentioned being in Boston and dealing with unexpected street crossings with cars coming, and all that you learn how to deal with surprise, yeah, and so it wasn't like there was anything magically brand new at the World Trade Center. So all of the skills, all of the life preparation for for me over the previous 51 years. Ooh, that gives away my age, but all that life preparation made it possible to learn to and actually control fear, so that I was able to use it in a constructive way, which is what the whole point is.   Amy SP Wilson ** 44:17 Yes, and that's why we, I think we've mentioned, like, the more you can learn, the more those things won't surprise you, and you're going to be ready to handle when life's throwing you curve balls,   Michael Hingson ** 44:30 right? And life tends to have a habit of doing that.   Amy SP Wilson ** 44:34 Yeah, universe has since humor that's pretty it does have a sense   Michael Hingson ** 44:39 of humor, but when it's throwing the curve balls, you can learn to hit those curve balls. So it's okay, yes, it's not a it's not a bad thing. How is the community reacting to safety, positive foundation and what you're doing and so on?   Amy SP Wilson ** 44:56 Overwhelming happiness in. Anytime I tell people we are here to offer choices, I've heard statements like, Finally, thank goodness. And I know from our trainings that that we offer it's been completely game changing for for people who went through our trainings, they they feel way more safe. We actually had one of our community people that flat out told me, if it was not for safety positive foundation, I would not have went to the National Federation of the Blind convention, because they just didn't feel like they were prepared. And I think it was a combination of learning things, and then, of course, us being there to help support them if something happened. But yeah, that was, I was floored when I heard that statement. I was like, do what that was. That was us. So we're bringing people out of their houses.   Michael Hingson ** 45:55 Well, things happen at conventions, and unfortunately, I don't know of any convention where things of one sort or another don't happen to one degree or another. So it is a matter of being prepared, but it's also a matter of monitoring yourself and knowing what you're going to allow yourself to get into and not get into to a degree as well. Yes,   Amy SP Wilson ** 46:17 absolutely. And like before we went, we had a safety briefing for our community to give them the rundown, and it was so overwhelming. I'm like, okay, apparently we're going to keep doing this because they they just they felt more prepared and safe for for those different things, and knew if something did happen, what policies procedures to follow, or who to who to be able to contact? Yeah,   Michael Hingson ** 46:44 and the National Federation has become a little bit more aware, and yes, they have, has helped in that process, which is, which is also a good thing.   Amy SP Wilson ** 46:56 Yes, I would very much agree with that as well. But,   Michael Hingson ** 47:00 but people do need to really take responsibility for themselves and their own actions, and so doing what you do clearly helps, I would think so. So, what role do partnerships play in what you do, and how is that affecting everything?   Amy SP Wilson ** 47:20 So when we with our partners, we bring in different people for different reasons, but essentially, it's to make sure our community has more resources for their personal safety. For example, we have partnered with Ali slaughter, who teaches yoga that you know, yoga can be very beneficial in so many ways. We also have partnered with NaVi lens to start, start working with them, because they are a company that offers these special cute like their specialized QR codes, but it can help you to navigate different areas. But not only that, you can create your own it's not like you got to wait for the company to do it. So you can label things around your house, where it'll be able to you know which remote or which seasoning. And the part I really like is it does it in multiple different languages, so it's not just a one and done deal. And then we've also partnered. Our most recent partner is Penny forward, and they teach financial literacy for the blind. And I'm like, financial safety, it is a thing like we seems like a very natural partnership here. So, yeah, yeah, we're, again, we partner with with people that are interested and helping the blind community become more safe.   Michael Hingson ** 48:47 Do you just work with the blind community, or do sighted or any persons without traditional disabilities ever become involved and become students and so on?   Amy SP Wilson ** 48:58 So we actually, we've had some sighted people attend our trainings and and events, and we are working behind the scenes to develop some different trainings for sighted individuals so they can communicate and interact with the blind community in a safe fashion, or just the disabled community, but there's, there's so much information, you know, out there, I feel like a lot of sighted people kind of don't know where to go, how to how to do stuff, and so we wanted to build that bridge of communication between the sighted or the non disabled world and the disabled community. I'd also like to note that, you know blind people typically, blindness is not their only concern. You know, sometimes people have mental health struggles. You. People or other types of disabilities. So we do work with other disabilities as as a result, we're not we, because we're a not for profit and we're new. We got to sort of niche down to the blind community, but we are happy to serve the disabled community as well, because from what I'm learning all disabilities lack personal safety choices.   Michael Hingson ** 50:27 They do or think they do, or probably both, which is, which is, it amounts to the same thing. Yes, we met, certainly through the NFB convention. Then also, I know that Sheldon Lewis from accessibe has reached out to you guys and, and I don't know   Amy SP Wilson ** 50:45 that's you know, you made me forget about the I've my apologies to accessibe, but yes, they are also one of our newest partners, making, yeah, making our website accessible we're happy to share With our other friends and stuff like, yeah, I, I love Sheldon from from access to be. He's one of my new friends, whether he wants it or not, but yeah, it's, it's pleasure that we're, we're also working with access to be as well.   Michael Hingson ** 51:18 That's pretty cool. I haven't been to the site and looked at it yet. I should really go visit the website. But because I've been now with accessibe for, oh, three and a half years, it'll be four years in January. So having a lot of fun, and again, I like the philosophy that it deals with a variety of different kinds of disabilities. And you're right. The fact is that whether whether we bring it upon ourselves or it's real, and it's probably both, we end up not having a lot of choices that we should have. But I think that that's what we need to do, as you point out, is to learn to advocate for ourselves, to bring those choices back into our lives.   Amy SP Wilson ** 52:06 Yes, you know, when I was talking with Sheldon from accessibe about us partnering with them, I said, Absolutely, because not only will it ensure our website's accessible, but I'm happy to tell people about it, because when blind people cannot navigate a website, it, it plays a big role into their psychological safety. And I mean, I, I'm a Mental Health First Aid person, you know, certified person, and I my joke was I needed Mental Health First Aid training to go through the training like it stressed me out, because it was so inaccessible, and I had to have people continuously helping me. And I actually had to take the course twice because of the lack of accessibility that that first go around and had to have people help me and stuff. And I'm like, This is crazy, like, we definitely need to to promote that more. And I'm so glad that they're just, you know, willing to work with with non for profits that are serving the disabled space like that, that that is going to be game changing for so many people and help them to feel more psychologically safe in going to those websites, they're not going to get stressed out and figuring out, how do I navigate this? Nope. Accessibe has got you so,   Michael Hingson ** 53:31 you know, here's a question, and I've asked a number of people this, but I'm curious to hear your answer. You mentioned earlier that we're not really involved in a lot of the conversations, whether it be about self defense, whether it be about personal safety and so on. Why is it that that blind or in general, persons with disabilities aren't involved in the conversations?   Amy SP Wilson ** 53:55 That is a great question. And I think that for some topics, it goes back to fear of being vulnerable in sharing what, what you're afraid of, at least for for personal safety. For some topics, they're they're hot topics, we discuss weapons and safety positive foundation and tell people, if that's a choice you want, we're happy to have the conversation. But people think that talking about weapons means that people are going to start buying firearms and getting involved with it, or bad things can happen, and that's where I go back to the if we're having a conversation about it, you can ask your questions and not have that fear wrapped around those particular topics, but that would be my personal answer,   Michael Hingson ** 54:56 yeah, I think all too often, suddenly. Weapons are the easy answer, yes, but they're not, no, they're not at all. But that's what people think. And they think that's going to take care of all of their fears. And it just doesn't work that way,   Amy SP Wilson ** 55:11 because often and it's statistically backed up, you know, oftentimes, those things will get turned on you, especially if you're not doing ongoing practice, and that's part of that proactive philosophy we talk about in safety positive is if you're choosing to use any kind of tool or device, you better be practicing with it at least once a month, minimum. And depending on the tool we're recommending even stronger practicing. But you you know, you can't just buy a pepper spray, drop it in your purse and you're good. It's like, no, because what happens when they do come to grab you? You're going to be finagling and but yeah, and then   Michael Hingson ** 55:59 you aim it the wrong way because you're not used to it. Yep, exactly. And it's and it's so important that, well, again, it goes back to like what we talked about before, with the mind, which is the most important tool that we have. And if we don't develop that tool by constant, and I believe it has to be constant use and constant us teaching ourselves we're not going to improve with it.   Amy SP Wilson ** 56:28 Exactly you. I mean, we are blessed right now that we have as much technology at at our fingertips to be able to phone a friend or use that app to help us cross the street, whatever the case might be, but technology fails, and so you can't say that this is going to be my, my backup for for everything, or for one of the things that I've learned is you Can't take your pepper spray through, you know, TSA. And there's certain things that, no, no, no, TSA, don't like it. So if you get too used to one kind of tool, it gets taken well, then what do you do? You have to have your own, your own mind to go, okay, I can handle this without all the fancy gizmos and gadgets.   Michael Hingson ** 57:18 Yeah. And, and TSA does what it does generally, for pretty good reasons. Yes,   Amy SP Wilson ** 57:25 yes, yeah, I understand their method to the madness. Yeah, it's still frustrating. Oh,   Michael Hingson ** 57:30 I know it is. You come all prepared, and then they take it away from you when, yeah, yeah. So of course, the the answer to that is you've got to put it somewhere in a bag where it's not reachable while you're on the flight. But that's another story   Amy SP Wilson ** 57:48 conversation for another day. Not that I'm talking about a short list that they will things that will get through TSA, but   Michael Hingson ** 57:55 well, how? Let me ask this. Then I think a relevant question, what are the future goals for safety positive Foundation?   Amy SP Wilson ** 58:05 We want to be the safety institution for the mind community, and so that's why we're we're very interested in bringing on more choices for trainings and working with different partners. So you know, when people think of personal safety in the blind community, their first thought is safety positive Foundation,   Michael Hingson ** 58:35 and that's pretty important to be able to do for you what's been the most rewarding experience you've had with safety positive foundation,   Amy SP Wilson ** 58:46 I would have to say it's watching the community grow as individuals like I said, you know, the one person that said, you know, if It wasn't for safety positive, I and I've heard, you know, other people telling me that they they feel safer and just learning different stuff, and that that is the the paycheck for me when I know we're we're making a difference in in people's lives, sometimes it makes me want to cry. I get, you know, so overwhelmed, but I I essentially do not want people to go through what I've went through in my life. And so the more that we can reach people and offer those resources and trainings that again, that that's what's going to do it for me,   Michael Hingson ** 59:46 so especially for blind people. But in general, what would be the message that you would most like for the community to hear from you regarding safety and safety positive foundation? Yeah.   Amy SP Wilson ** 1:00:00 When it comes to, I guess, sharing with the sighted community, be aware I'm teaching them that no is a complete sentence, and they don't gotta give you their backstory of why they don't want to accept your help, and if somebody doesn't want to take your assistance. Don't take it personal. That you know, there's so many people who do take it personal. When you tell them, No, I've got this. It's not about you. It's about people having the dignity and respect for themselves to sometimes do things on their own, or talk to you about how maybe you can assist them in a in a in a different manner, but yeah, just just don't take it personal. And no, you're also probably going to mess up a time or two. You're not You're not always going to get it perfect, because I know me as a person in the community, I mess it up sometimes.   Michael Hingson ** 1:01:01 You know, there's a lot of value in getting lost. And I, I worked in the World Trade Center a lot to get lost, because when you get lost, then you gotta figure out, how did you get lost, and how do you get out of being lost, and people helping isn't going to give you that learning experience of recovering, or, you know, using what we call whole structured discovery. The bottom line is, yeah, yeah, go ahead. I   Amy SP Wilson ** 1:01:30 say. I love the structured discovery. My whole organization, my board, yeah, when, when they like. I've got a couple of sighted board members, and they were new to the blind community, but knew it needed, you know, they were the ones who convinced me to start this. But once they learned about structured discovery, they were like, This is awesome, like, because I tell them, you know, don't help people, let them figure it out. And they watch, and they learned real fast that, okay, yeah, there is a method to the madness here.   Michael Hingson ** 1:02:04 Yeah, it's, it's important to be able to deal with, deal with, with variety of things. And you're going to be best if you teach yourself how to recover from being lost very quickly. What is structured discovery?   Amy SP Wilson ** 1:02:24 So my understanding, because I've not been given the quote, unquote definition, is where you you have an environment to where you are, um, walking through it yourself and and discovering your your environment on your own with your your white cane, your your guide dog, but you're essentially like, yeah, discovering the the environment on your own accord. Michael, you might have a different answer, but that's that's my, my understanding well,   Michael Hingson ** 1:03:00 and the other part of it is you're walking along, you expect to be going somewhere, and suddenly you discover you're not where you thought you were, or you walk on grass and you didn't expect to be there. Structured discovery also teaches you how what you do is you step back, mentally and then physically. But you step back, you go back and retrace what you did to figure out where it is that you deviated from the path that you were expecting to be on. And it works very well.   Amy SP Wilson ** 1:03:33 I've used it and all the traveling I do, yes, I've gotten lost and had to backtrack. And how did we do this? Where did we go wrong? And believe me, I'll never forget those routes.   Michael Hingson ** 1:03:48 Tell me how. So how do people get involved in the safety positive foundation? If they would like to.   Amy SP Wilson ** 1:03:57 So there's a couple different options. You can go to our website, at safety positive fdn.org, you can also we have a YouTube channel with lots of videos on on different information, and we have our Facebook page, the Facebook page and our website has links where you can come In and be part of our safety positive guide community, or you can also email us, phone call, just don't say send smoke signals. We're not going   Michael Hingson ** 1:04:31 to get those. Yeah, don't raise your hand. Don't raise your hand. That doesn't work. No,   Amy SP Wilson ** 1:04:35 no, no. It's lost on us.   Michael Hingson ** 1:04:39 Yeah, it is on all of us, which is what's okay, it's always something to be learned. Well, I want to thank you for taking the time to be here with us for more than the last hour. It's been fun, and I hope that that people have learned something from it. We'll definitely get to see you next. At the NFB convention, I assume, and that'll be kind of fun too.   Amy SP Wilson ** 1:05:02 Yes, we're going to be there with bells on. There you   Michael Hingson ** 1:05:05 go. Well, we'll, we'll be there. Yeah, and, and I'll, I'll bring my dog over, and either he'll teach self defense or he'll learn self defense. I'm not, there we go. He'll probably be looking for ear scratches and nothing else. So it's okay. We all,   Amy SP Wilson ** 1:05:24 we all need a little love from time to time. Yeah, yeah, and he's   Michael Hingson ** 1:05:27 good at that. Well, well, thank you again for being here. This has been absolutely enjoyable, and if you've enjoyed listening to us, please let us know you can email me at Michael H I M, I C, H, A, E, L, H i at accessibe, A, C, C, E, S, S, I, B, e.com, you can also go to our podcast page, where there's a contact form, and that's w, w, w, dot Michael hingson.com/podcast, that's m, I, C, H, A, E, L, H, I N, G, S o, n.com/podcast. We'd love to hear from you, and wherever you're listening or monitoring our podcast today, I hope that you'll give us a five star review. We really value your reviews. We appreciate it if you know of anyone and Amy you as well. If you know of anyone who you think might be a good guest for the podcast, we'd like to hear from you. We'd like you to provide an introduction. We're always looking for people who want to come on and tell their stories and help all of us see why we're all more unstoppable than we think we are. So I want to thank you all for for that as well. And Amy, once again, really appreciate you being here today. This has been a lot of fun. I   Amy SP Wilson ** 1:06:38 appreciate it, and I will end with my two cents of keep it safe, keep it positive and keep it safe and positive.   **Michael Hingson ** 1:06:50 You have been listening to the Unstoppable Mindset podcast. Thanks for dropping by. I hope that you'll join us again next week, and in future weeks for upcoming episodes. To subscribe to our podcast and to learn about upcoming episodes, please visit www dot Michael hingson.com slash podcast. Michael Hingson is spelled m i c h a e l h i n g s o n. While you're on the site., please use the form there to recommend people who we ought to interview in upcoming editions of the show. And also, we ask you and urge you to invite your friends to join us in the future. If you know of any one or any organization needing a speaker for an event, please email me at speaker at Michael hingson.com. I appreciate it very much. To learn more about the concept of blinded by fear, please visit www dot Michael hingson.com forward slash blinded by fear and while you're there, feel free to pick up a copy of my free eBook entitled blinded by fear. The unstoppable mindset podcast is provided by access cast an initiative of accessiBe and is sponsored by accessiBe. Please visit www.accessibe.com . AccessiBe is spelled a c c e s s i b e. There you can learn all about how you can make your website inclusive for all persons with disabilities and how you can help make the internet fully inclusive by 2025. Thanks again for Listening. Please come back and visit us again next week. Amy SP Wilson, the trailblazer behind the Safety Positive Foundation, is revolutionizing personal safety for the blind and visually impaired community. Her journey began in March of 2023, but her path has been shaped by a diverse range of experiences. Some have been uplifting, while others have been challenging, but each one has served as a valuable lesson that propelled her towards the creation of the Safety Positive Foundation. Amy's commitment to personal safety has been a lifelong pursuit. From playfully wrestling with her cousins during her early years to becoming the first female wrestler at the Missouri School for the Blind in 1996, her passion for wrestling led her to the United States Association of Blind Athletes nationals in 1997, where she discovered Judo. In 1998, Amy proudly represented her country in the World Championships for the Blind in Judo, as a member of the inaugural women's Judo team of the USABA, all before graduating from high school. Unfortunately, Amy's eye condition, Stargardt's, prevented her from continuing her martial arts journey. Diagnosed at the age of 10 in 1992, she faced initial struggles. However, connecting with others who were also blind or visually impaired raised her expectations and inspired her to persevere. As life progressed, Amy earned her first bachelor's degree in psychology, only to become a survivor of domestic violence shortly thereafter. This was not her first experience as a survivor, and it is one of the primary reasons why she advocates for self-empowerment. Amy is deeply passionate about addressing the alarming rates of mental and emotional abuse within relationships involving individuals with disabilities. Amy's pursuit of knowledge led her to earn a second bachelor's degree in social work, providing her with valuable insights into developing systems within the Safety Positive Foundation. She consistently puts her education into practice, utilizing her expertise to make a difference. For the past decade, Amy has been involved in instructing and developing self-defense programs specifically designed for the blind and visually impaired. However, she found that these programs and organizations often had limited expectations for the BVI community, which did not align with her mission. Amy firmly believes that low expectations act as barriers, and she advocates for the BVI community to have unlimited choices when it comes to personal safety. Amy has dedicated her life to making this mission a reality for her community. She actively engages with the BVI community in various capacities, striving to enhance their lives as much as possible. Through the establishment of the Safety Positive Foundation, Amy shares her skills and empowers her community to embrace a safety-positive lifestyle. Ways to connect with Amy: Amy's digital business card link https://linqapp.com/ Book a meeting with me https://bit.ly/3LOviXT Website www.safetypositivefdn.org Facebook https://bit.ly/4fvKMO4 YouTube https://bit.ly/4d5FQy2 TikTok https://bit.ly/3LO9Ja1 LinkedIn https://bit.ly/4fvRbsE Instagram https://bit.ly/4duJq4B Contact info amyspwilson@safetypositivefdn.org 660-441-1907 About the Host: Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog. Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT&T, Federal Express, Scripps College, Rutgers University, Children's Hospital, and the American Red Cross just to name a few. He is Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association's 2012 Hero Dog Awards. https://michaelhingson.com https://www.facebook.com/michael.hingson.author.speaker/ https://twitter.com/mhingson https://www.youtube.com/user/mhingson https://www.linkedin.com/in/michaelhingson/ accessiBe Links https://accessibe.com/ https://www.youtube.com/c/accessiBe https://www.linkedin.com/company/accessibe/mycompany/ https://www.facebook.com/accessibe/ Thanks for listening! Thanks so much for listening to our podcast! If you enjoyed this episode and think that others could benefit from listening, please share it using the social media buttons on this page. Do you have some feedback or questions about this episode? Leave a comment in the section below! Subscribe to the podcast If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can subscribe in your favorite podcast app. You can also support our podcast through our tip jar https://tips.pinecast.com/jar/unstoppable-mindset . Leave us an Apple Podcasts review Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts. Transcription Notes:

In Episode 124 of White Canes Connect, hosts Lisa Bryant and David Goldstein sit down with Patti Cox, President of the Council of Citizens with Low Vision International (CCLVI), and Glenda Such, head of Low Vision Now! The discussion, which takes place during Low Vision Awareness Month, highlights the challenges, advocacy, and support systems available for individuals with low vision. Patti shares her personal journey with aniridia and how she became deeply involved with CCLVI, a national organization affiliated with the American Council of the Blind. She outlines the importance of advocacy, education, and peer support for those navigating fluctuating vision loss. Glenda, who has experienced progressive vision loss from Stargardt's Type IV, recounts how Low Vision Now! evolved from a local chapter to a multi-state organization offering valuable resources, peer support, and education to individuals across the country. The episode delves into the importance of self-advocacy, misconceptions about blindness, and the unique needs of the low vision community. Patti and Glenda also highlight the various programs, scholarships, and resources available through their organizations, emphasizing the significance of connection and empowerment. Show notes at https://www.whitecanesconnect.com/124  Connect with Low Vision Now Learn more about Low Vision Now on their website at https://lowvisionnow.org/. Email them at lowvisionnow@hotmail.com. You can also call them at (484) 566-3619. Connect with Council of Citizen with Low Vision International Learn more about CCLVI at https://cclvi.info/. Call them toll-free at (844) 460-0625. Email Patti at CCLVIPresident@CCLVI.org. An Easy Way to Help the NFB of PA Support the NFB of PA with every purchase at White Cane Coffee Company by going to https://www.whitecanecoffee.com/ref/nfbp. When you use that link to purchase from White Cane Coffee, the NFB of PA earns a 10% commission! Share the link with your family and friends! Listen to Erin and Bob Willman from White Cane Coffee on episode 072 of White Canes Connect. Donate to the NFB of PA Like what you hear on White Canes Connect? Support us and donate to the National Federation of the Blind of Pennsylvania, visit https://www.NFBofPA.org/give/. We Want to Hear Your Story Reach out with questions and comments, or share ideas! We want to hear from you. Call us at (267) 338-4495 or at whitecanesconnect@gmail.com. Follow White Canes Connect Find out why White Canes Connect is currently ranked at #13 of the 100 Best Visually Impaired Podcast. Find the show on: Apple Podcasts: https://podcasts.apple.com/us/podcast/white-canes-connect/id1592248709  Spotify: https://open.spotify.com/show/1YDQSJqpoteGb1UMPwRSuI  YouTube: https://www.youtube.com/@pablindpodcast 

In this episode, we sit down with the founders of the 2 Blind Brothers apparel company Brad and Bryan Manning to discuss the positive impact their wildly successful clothing brand has had on blindness research and treatment advancement for Stargardt's maculopthy, a condition both brothers have. Key Takeaways:2BB has a powerful origin story. Brad and Bryan were shopping in Bloomingdales when they realized they bought the same shirt based on feel alone due to challenging nature of clothes shopping when visually impaired. Thus was born this idea of creating an apparel brand that was so comfortable on initial feel that you'd want to buy it.2BB donates 100% of all company profits to fund blindness research. It has grown into the eye care industry through partnering with L'Amy who was donating proceeds form their sales to 2BB by purchasing plush guide dogs.To date, 2BB has donated more than $3 million to research and supporting businesses that employ individuals with visual impairment. That funding has directly impacted bringing genetic treatment options to the market for genetic retinal/ neuron-ophthalmic disease including Stargardt's.Having a noble cause that the business supports cultivates a deeper emotional connection with customers for which that cause resonates. The story must be authentic and true to who your business is. What Brad and Bryan are reading:Brad: Shoe Dog by Phil KnightBryan: What Got You Here Won't Get You There by Marshall Goldsmith and Mark ReiterLearn more about 2BB:FramesApparelPractice Advantage Reading List** Don't miss out on an extra $10 rebate for all commercial VSP Eye Exams this year! Earn up to an additional $60,000 in 2025 just by taking great care of patients. Visit www.pecaaexamrebate.com now!**

January 24, 2025. Aniz Girach, MD, the chief medical officer at SpliceBio, talks to host Ben Shaberman all about the company's emerging protein-splicing therapy for Stargardt disease which has received clearance from the FDA to move into a clinical trial.

In episode 1 of the Two Journeys to Employment series, Kat Wilke shares her inspiring journey from high school to becoming a speech-language pathologist. Diagnosed with Stargardt's disease in eighth grade, Kat overcame challenges with vision loss by connecting with Minnesota's State Services for the Blind (SSB), which helped her develop self-advocacy skills and provided vital resources like assistive technology. As a peer educator, Kat shared college tips with other students, fostering a sense of community. She encourages high school students to embrace their unique paths, explore resources, and take pride in their differences. Kat's story shows how persistence, support, and passion can lead to fulfilling careers and personal growth.   Full Transcript  

Bob Bell, PhD, chief scientific officer at Ascidian Therapeutics, talks with host Ben Shaberman about STELLAR, the company's Phase 1/2 clinical trial for its emerging RNA-rewriting therapy for Stargardt disease (ABCA4 mutations). Dr. Bell also provides overviews of Stargardt disease, the role of RNA in cells, and the advantages of RNA re-writing over other genetic treatment approaches. Learn more about the clinical trial at STELLAR. Learn more about the prescreening study for STELLAR at PRESCREEN.

Jason, a lifelong member of The Church of Jesus Christ of Latter-day Saints from Northern Ireland, concluded his remarkable athletic career this past March. Despite being legally blind due to Stargardt's disease, he competed at the highest levels of Paralympic... The post 865 Jason Smyth – The Fastest Paralympian on the Planet appeared first on The Cultural Hall Podcast.

If you have vision problems, this episode is for you! Visual performance can be improved with physical therapy for your eyes, quality food, top supplements, and biohacking tools such as microcurrent devices for the eyes which are all topics of today's show. Special notes about Starguardt disease at the end. Not listening on Spotify? Find show notes at: https://ashleydeeley.com/w2w/nautraleyecare New episodes of Welcome to Wellness released every Friday. Brought to you by Primeadine Dr. Marc Grossman is a holistic optometrist on a mission to help others improve their vision holistically. 4:15: What are floaters and how to reduce them (blog post on floaters) 6:53: Digestive enzymes can reduce floaters! So can peptides! 10:05: Tom Beckman + Heart Math Institute 11:19: Eyes hurt when reading? Check prescription and check out Irlen syndrome for tinted glasses for relief from eye strain 13:15: How pregnancy affects vision 14:10: Testosterone eye drops for dry eye treatment 17:45: Exosome injections and high dose fish oil as treatment for dry eye 18:41: Microcurrent device for the eyes 20:34: NMN for eye health 20:59: Advice for macular degeneration 21:52: Supplements for eye health: Lutein and Zeaxanthin Mesozeaxanthin Lion's Mane mushroom extract Billberry 25:26: Four minute workout - Zach Bush 25:51: Organic Castor oil (castor oil packs) 26:17: Free eBook for Eye Exercises 30:20: Migraines and eye pressure 34:34: Advice on Starguardt's disease: Studies have indicated Vitamin A and beta carotene should be avoided in food and supplements. They have put together Stargardt packages that avoid these nutrients as well as other carotenoids that can be converted to vitamin A, but contain a wide range of nutrients to support retinal and overall vision health.   Stargardt's Package 1 (3-month supply) OR   Stargardt's Package 2 (3-month supply) - same as package 1 but with NMN added. Also, take a look at the following home unit - Microcurrent Stimulation 100ile Purchase Option  Where to find Dr. Grossman: Website Podcast

It was not just one struggle in her life that shaped Marissa Nehlsen. Since her formative years, she's faced adversity and come out stronger every time.  Despite significant hardships, including the loss of her family farm, enduring domestic abuse from her father, and coping with Stargardt disease, which has led to blindness, Marissa has built … Read More Read More

In 2000 Chris Smith was diagnosed with Stargardt's Disease, by 2009 he was declared legally blind. No longer able to drive he turned to the bike as a way to get to work 3 miles from his house. At the time he tipped the scales at over 300 lbs and the 3 mile ride to work was a real challenge, but Chris wasn't discouraged. He kept at it, joined friends for group rides, and eventually went on to earn a buckle at Leadville in 2019, to mark his 10th year of blindness. He went back the following 3 years, each time earning a buckle. For his 15th anniversary of being declared legally blind he set his sites higher, much higher. After watching Ride The Divide he decided to take on the holy grail of bikepacking, the Tour Divide. An ambitious goal for anyone, but particularly so for Chris since he hadn't done a multi-day bikepacking trip, and he's blind. Undeterred, he hired a coach, and started training for the Grand Depart, only 8 months away. It took him 47 days and 10 hours, he was the 2nd to last finisher, but nothing stopped Chris from accomplishing his goal, and after riding the Tour Divide, I doubt anything ever will. Chris was riding to bring awareness to blindness and raising money for the Foundation Fighting Blindness. Through his efforts he was able to raise $28,000 which will go to help finding cures for blindness diseases like his. You can find out more about Chris, and donate, on his website. EPISODE SPONSORS Red Granite Grinder - Epic gravel race in Wisconsin on Oct. 12th, 2024. Smash the link for more information and registration. Follow My Challenge - The official tracking service for Texas Showdown Series any many other premier events. New Patrons  Nathaniel Ray Join them won't you? Now is a great time to sign up at Patreon!