Podcasts about stargardt

Erin Philpott shares her journey with Stargardt disease, revealing how she navigated diagnosis as a teenager and now balances motherhood while advocating for invisible disabilities in the workplace and beyond.• Erin faces significant daily challenges with transportation as a legally blind mother to a five-year-old• Often encounters misconceptions as she doesn't "look blind" without using a cane or guide dog• Erin chairs an employee-led committee advocating for disability, accessibility and inclusion• Erin emphasises that accessibility benefits everyone, not just people with disabilities• Advocates for building accessibility into initial designs rather than adding as afterthoughts• Challenges the stigma that disability means limitation: "Make it accessible and we'll come in droves"Please keep the conversation going via our Website, on Facebook, or on Instagram.

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!**

Martina (53) wurde 2017 mit Morbus Stargardt diagnostiziert, einer seltenen Netzhauterkrankung, die schrittweise zur Erblindung führt. Ihre Sehfähigkeit beträgt heute nur noch 2%. Trotz dieser Herausforderung erzählt sie, wie sie ihren Alltag mit beeindruckendem Mut und Willenskraft meistert.

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  

Powerful stuff as Nicola Cassidy reflected on a year of sobriety! The Mynes sisters Caitlyn and Caoimhe are excited to be taking their project about the rare Stargardt's disease to the BT Young Scientists this week. Colm Lynch, who runs the Hop Pole public house in London's Wandsworth, told of the trend towards drinking Guinness and how it's in short supply? Sinead Burke who is into Nollaig na mBan explained some of its more unusual traditions! Hosted on Acast. See acast.com/privacy for more information.

Send us your feedbackFor this episode of the My Macular and Me podcast, we are revisiting one of talks from Dr Matteo Rizzi, research fellow at UCL Institute of Ophthalmology, as he speaks on Stargardt disease and how it affects vision, as well as the future of gene therapy.Dr Matteo Rizzi joined the My Macular and Me podcast with Dr Omar Mahroo earlier this year to discuss photopsia and photophobia in patients with Stargardt disease. If you would like to find out more on this topic, you can listen here.For more information on registration, please visit the Macular Society website. Or if you have any questions, please get in touch at help@macularsociety.orgThe Macular Society has been supporting people with macular conditions for over 30 years. The right information and support can help people overcome their worries and retain their independence. We provide free information and support to those with macular disease, along with their family and friends. If you or a family member need advice or support, please make sure to reach out. No one has to face macular disease alone. Please call us on 0300 3030 111.

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.

Hear our innovative research grantees discuss their projects and the exciting progress they are making, and see how your gift can make a real impact this Big Give. Our panel includes Professor Majlinda Lako: Professor Majlinda Lako is the co-director of regenerative medicine stem cells and transplantation at Newcastle University. Professor Lako is a member of the Biosciences Institute and her work contributes to the Regenerative Medicine, Stem Cells and Transplantation research Theme. She is also part of the Neuroscience NUCoRE. Professor Jacqueline van der Spuy: Jacqueline van der Spuy is a Professor of Molecular and Cellular Biology at the UCL Institute of Ophthalmology, which she joined as a Wellcome Trust Travelling Research Fellow in 2000. Jacqueline's research aims to understand the molecular basis of and develop treatments for inherited retinal dystrophies (IRDs). Professor van der Spuy is currently supervising PhD student Gabriel, whose project explores the potential use of prime editing as a route to treating Stargardt disease. Elena Piotter, DPhil Student and Retina UK / Macular Society Scholar: Elena completed her Bachelors in International Relations (BA) and Global Disease Biology (BSc) at the University of California, Davis. She is currently pursuing her Masters in Molecular Biology at the Reijksuniversiteit Groningen, for which she is undertaking a research project as an Honorary Academic Visitor in Professor Robert MacLaren's lab. Her project focuses on utilizing CRISPR-Cas9 in addressing degenerative eye disease.

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.

For the past several years, ACTA has collaborated with the Alumni Free Speech Alliance (AFSA) to defend free expression, academic freedom, and viewpoint diversity on college and university campuses. With hundreds of alumni advocates across 27 institutions, AFSA represents a national movement empowering alumni to exert positive, meaningful influence on their alma maters. One of the most active groups to emerge from this movement is the MIT Free Speech Alliance (MFSA). As they support activities from on-campus debates to off-campus mobilization, MFSA members have proven to be both friends and ardent critics of their alma mater. This fall, ACTA's College Debates and Discourse Alliance curricular fellow, Dr. Bryan Paul, attended MFSA's annual conference in Cambridge, Massachusetts, where he moderated a panel discussion with senior administrators from several institutions on strategies to improve the free speech culture on college campuses. He also recorded this interview with MFSA President Wayne Stargardt and MFSA Executive Director Peter Bonilla, a deep dive into MFSA's reform efforts at MIT and beyond. 

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

In Episode 112 of White Canes Connect, hosts Lisa Bryant and David Goldstein welcome Bailey Bostelman, Regional Field Director for the Foundation Fighting Blindness (FFB). The episode highlights the upcoming VisionWalk in Philadelphia on October 5th, where Lisa will be participating. Bailey shares insights into the mission of FFB, which has raised over $915 million to fund research for inherited retinal diseases like retinitis pigmentosa and Stargardt disease. She emphasizes the importance of community education, connecting those with low vision to resources, and the organization's no-cost genetic testing program. This initiative helps individuals with inherited retinal diseases better understand their diagnosis and access potential treatments. Bailey also discusses FFB's VisionWalk, which began in 2006 and has since raised over $64 million. The Philadelphia walk, part of FFB's annual fundraiser, aims to raise $150,000 to support research and public health education. The episode also highlights FFB's professional outreach to medical professionals to bridge the gap between diagnosis and available resources. Listeners are encouraged to participate in the walk, donate, or get involved in other fundraising and volunteer efforts. Show notes at https://www.whitecanesconnect.com/112  Learn More & Connect with the Foundation Fighting Blindness Find other VisionWalks at https://www.fightingblindness.org/visionwalk. Contact the FFB at chapters@fightingblindness.org. Listen to episode 057 that featured the Foundation Fighting Blindness at https://traffic.libsyn.com/whitecanesconnect/white_canes_connect_057_post.mp3. Support Lisa's VisionWalk at https://give.fightingblindness.org/fundraiser/5713819. 2024 NFB of PA State Convention Registration is open for this year's State Convention in Erie from 11/7 to 11/10. Learn more at https://www.NFBofPA.org/2024/. Links are there to register as an attendee, exhibitor, and sponsor. Other links include meal option descriptions, Senior Possibilities Fair registration, and phone numbers to make your hotel reservations. 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 If you want to 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 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 

Tarris Marie was a wife and mother with 15 years of experience in corporate America, when she noticed her vision becoming slightly distorted. Shortly after, she was diagnosed with Stargardt disease, a genetic condition that ultimately led Tarris to become legally blind. After losing her central vision, leaving her career, and experiencing death in her family — Tarris hit rock bottom. Until she heard a voice telling her, "write a book".    Today, Tarris Marie sits down with Benjamin to discuss how this experience ultimately led to her writing her debut novel, Blaque Pearle, despite never having written anything like it before. She also reveals her experience adjusting to life with only her peripheral vision, carving out a new professional pathway, and relying on her faith and family to fuel her resilience. Follow Benjamin on X: @BenjaminHallFNC Learn more about your ad choices. Visit megaphone.fm/adchoices

Join us for an in-depth discussion on Stargardt disease, a rare inherited form of juvenile macular degeneration that affects about 1 in 10,000 children and young adults. Learn about the latest in diagnosis, genetic testing, and promising treatments, which researchers are also evaluating in geographic atrophy.

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!

Leonide Saad, PhD, founder and chief scientific officer of the biotech Alkeus, talks to host Ben Shaberman about his company's emerging therapy, gildeuretinol, a modified form of vitamin A which has performed well in clinical trials for people with Stargardt disease.

Check out this exclusive Beacon Story podcast with WROC's Adam Chodak and professional Para triathlete Deb Chucoski as they discuss living with Stargardt disease and the amazing achievements of those who refuse to let it define them. Deb's journey is a testament to the power of resilience and determination. Hear her story and how the Paralympic Games provide a platform for athletes with vision loss and any disability to showcase their extraordinary talents! This special Foundation Fighting Blindness Beacon Story podcast episode is sponsored by Alkeus Pharmaceuticals.

Hey everyone! In this episode of The Blind Life podcast, I share my vision story – from my diagnosis with Stargardt's disease at age 11 to how it has progressed over the years. Discover how I navigated school challenges, found solace at a school for the blind, and adapted to life with limited vision. Plus, learn about my tips for living independently with Stargardt's. Big thanks to Irie A.T. for sponsoring this video. Don't forget to like, subscribe, and share your own vision stories with #VisionStory! Sponsor: irie-at.com #TheBlindLife #StargardtsDisease #VisionImpairment #LivingBlind #Accessibility #BlindnessAwareness #AssistiveTech #Inspiration #SubscribeNow  

This week Joeita speaks to blind YouTuber Sam Seavey, creator of the Blind Life YouTube channel.HighlightsBlindness & Technology - Opening Remarks (00:00)Introducing Sam Seavey – YouTuber & Host of the Blind Life (01:13)Growing the Channel & Standing Out from the Crowd (03:06)Knowing Your Audience (04:51)Latest Tech Developments for the Blind (05:56)Applications of AI (08:18)Ethics of Adopting AI in the Blind and Low Vision Community (10:24)Virtual Reality, Augmented Reality & the Visually Impaired (12:00)Patriot Viewpoint Edge Enhancement (14:40)DIY Tech Solutions (15:47)Addressing the Digital Divide (17:05)Financial Barriers to Accessing Assistive Devices (18:51)TechnoAbleism & “Fixing Disability” (21:04)Blind & Low Vision Innovators in the Tech Field (24:06)Exciting Accessible Tech on the Horizon (25:11)Show Close (26:09)About Sam SeaveySam was diagnosed at age 11 with Stargardt's, an early onset form of macular degeneration, and was legally blind by his mid-teens. Over the last 30 years, he has developed an extensive background in research and understanding of assistive devices and techniques of living with low vision.Sam is the founder and creator of The Blind Life YouTube Channel, which, according to a recent article from the Foundation Fighting Blindness, “is currently the largest resource for assistive technology on the internet.” With more than 50,000 subscribers and over 700 informative videos, Sam helps people world-wide living with vision loss, offering tips for managing daily tasks, reviewing assistive devices, and hosting informative interviews with key stakeholders in the visually impaired community. Sam is recognized as an expert when speaking and presenting at national conferences. Featured in USA TODAY, WIREDMagazine, and numerous national and international podcasts on assistive technology, he collaborates with tech giants like Google, SONY and Amazon, has created content for numerous websites and participates on Microsoft's Window's Accessibility Advisory Board. Sam currently manages the A-T program at a nonprofit where he provides training on assistive devices ranging from low tech items like simple bump dots and magnifiers, to phone apps and assistive computer software. Whether he's working one on one with clients or through his YouTube videos, Sam's goal is to help everyone live their BEST BLIND LIFES!Links: The Blind Life Website, YouTube & Podcast   About The PulseOn The Pulse, host Joeita Gupta brings us closer to issues impacting the disability community across Canada.Joeita Gupta has nurtured a life-long dream to work in radio! She's blind, moved to Toronto in 2004 and got her start in radio at CKLN, 88.1 FM in Toronto. A former co-host of AMI-audio's Live from Studio 5, Joeita also works full-time at a nonprofit in Toronto, specializing in housing/tenant rights. Find Joeita on X / Twitter: https://twitter.com/JoeitaGupta The Pulse airs weekly on AMI-audio. For more information, visit https://www.ami.ca/ThePulse/ About AMIAMI is a not-for-profit media company that entertains, informs and empowers Canadians who are blind or partially sighted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI's vision is to establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through inclusion, representation, accessible media, reflection, representation and portrayal. Learn more at AMI.caConnect on Twitter @AccessibleMediaOn Instagram @accessiblemediaincOn Facebook at @AccessibleMediaIncOn TikTok @accessiblemediaincEmail feedback@ami.ca

Stargardt Disease and Age Related Macular Degeneration. Speakers: Thomas Wubben, MD, PhD; Jason Miller, MD, PhD and Esther Biswas-Fiss, PhD This session will feature clinicans and researchers discussing recent updates for Stargardt disease and age-related macular degeneration.

Emily Annakin has just completed her studies in Architecture and Planning at the University of the West of England in Bristol with a 2:1.  Prior to starting her degree and while studying for her A-levels with all the covid restrictions at the same time Emily's eye sight started to deteriorate and she was diagnosed with Stargardt disease which also got worse during her Architecture degree.   For part of her final year project, Emily reimagined a section of Bristol's harbour side making it more accessible and maybe more nature friendly too. RNIB connect Radio's Toby Davey recently caught up with Emily to find out how starting to lose her sight during her A-levels affected her at the time, how she moved from using a pencil and paper to an iPad for her architecture and planning designs during her Foundation Year and throughout her studies for her Architecture and Planning degree. Looking at how to make open spaces more accessible to blind and partially sighted people for her degree dissertation and working with a group of visually impaired people may have given Emily the chance to in a way have time to come to terms with her own sight loss. To her plans for the future in architecture and planning now that Emily has graduated. There is more about Stargardt disease on the following pages of the RNIB website -https://www.rnib.org.uk/your-eyes/eye-conditions-az/stargardt-disease You will also find out more about the Architecture and Planning degree at the University of the West of England by visiting the following pages of the UWE website - https://courses.uwe.ac.uk/KK14/architecture-and-planning (Image shows RNIB logo. 'RNIB' written in black capital letters over a white background and underlined with a bold pink line, with the words 'See differently' underneath)

Inherited retinal diseases are a group of genetic conditions that cause progressive and severe vision loss, such as retinitis pigmentosa, choroideremia, and Stargardt disease. Though they vary in terms of their genetic drivers, they are characterized by degeneration of photoreceptor cells in the retina. Collectively, inherited retinal diseases affect more than 2 million people around the world and are largely without reliable treatment options. Kiora Pharmaceuticals is developing a new class of therapies that can restore vision in these conditions by targeting retinal ganglion cells and enabling them to become light sensing to compensate for the degeneration of rods and cones in the eye. We spoke to Brian Strem, CEO of Kiora Pharmaceuticals, about inherited retinal diseases, how Kiora's experimental therapy works to treat these conditions, and a recent collaboration that will help drive clinical development of its lead experimental therapy.

In the latest episode of New Insight with Veeral Sheth, MD, host Veeral Sheth, MD, director of clinical research at University Retina, speaks with Seemi Khan, chief medical officer at Alkeus Pharmaceuticals, on the company's lead candidate being evaluated in clinical trials for the treatment of Stargardt disease and geographic atrophy (GA) secondary to age-related macular degeneration (AMD). Gildeuretinol is a novel molecule designed as a specialized form of deuterated vitamin A to reduce the dimerization of vitamin A without disrupting vision. The therapy has received Breakthrough and Orphan Drug designations from the US Food and Drug Administration (FDA). Listen to the conversation between experts on Khan's background in the pharmaceutical industry, including time spent at Abbott, Abbvie, and Quark Pharmaceuticals, her experience bringing treatments to patients with rare diseases, and the impressive data from gildeuretinol in the TEASE clinical trial program for a currently unmet need. Episode Highlights 0:07 Episode Intro 0:57 Seemi Khan's background 4:38 Mechanism of action of gildeuretinol 7:22 Patient populations 9:00 TEASE clinical trial program 14:37 Gildeuretinol in GA 16:32 Safety data 18:47 Next steps for Alkeus 22:28 Conclusion Check out more ophthalmology coverage at HCPLive.com!

In this Very Special Episode, Emily Walsh Martin, PhD explores the cutting-edge transposase-based technology presented by SalioGen at the ASGCT Annual Meeting in which they achieved gene insertion without double-strand breaks. Join us as Jason Cole, CEO at SalioGen, takes us on a captivating journey through the company's groundbreaking work, including their initial data in Stargardt disease using LNP delivery to photoreceptors. But that's not all! Discover Jason's unconventional path from small molecules to genetic medicines and gain insights into the strategic value of using a target product profile to guide development decisions. Finally, we delve into the transformative potential of genetic medicine, bridging the gap from bench to bedside to payer-to-patient access. And before we dive in, a quick reminder: The ASGCT Policy Summit (Sept 23-24 in DC or online) is an absolute must for R&D scientists, analytical experts, clinical researchers, and program managers seeking a comprehensive understanding of genetic medicine development. Don't miss this crucial conversation between regulators, payors, patients, caregivers, and developers. ASGCT.org/PolicySummit Music by: https://www.steven-obrien.net/--------------------------Bright New Morning - Steven O'Brien (Used for free under a Creative Commons Attribution 4.0 License: https://creativecommons.org/licenses/by/4.0/)Show your support for ASGCT!: https://asgct.org/membership/donateSee omnystudio.com/listener for privacy information.

When I meet Matt De Gruchy for the first time this year at a Gala event, I could have mistaken him for someone with 20/20 vision... Until I noticed he was 'looking' a little to the left of me when he spoke to me. On the path to losing 96% of his sight to Stargardt's disease, Matt grappled with acceptance, self-isolation, weight-management, and generally landing himself in a pretty dark place - metaphorically, I mean.  But people like Matt don't stay in the dark. They level up, and step up, and that's what you're going to hear about today. Matt's enthusiasm is infectious and his message clear. It's about ability, not disability... and he's out to influence those who need it - don't we all! If you're inspired by people with a vision, you're going to LOVE Matt.. I sure did!   TESTART FAMILY LAWYERS Website: testartfamilylawyers.com.au MATT DE GRUCHY Website: mattdegruchyvision.com TIFFANEE COOK Linktree: linktr.ee/rollwiththepunches/ Website: rollwiththepunches.com.au LinkedIn: linkedin.com/in/tiffaneecook/ Facebook: facebook.com/rollwiththepunchespodcast/ Instagram: instagram.com/rollwiththepunches_podcast/ Instagram: instagram.com/tiffaneeandco    See omnystudio.com/listener for privacy information.

Let a Kondo Marie consultant help you spark joy again; Being diagnosed with Stargardt disease; And Bridgerton-mania strikes! Penelope and Colin spill the beans!!

This faith-refreshing conversation is all about spotlighting and learning from an incredible man whose faith has helped him build an impressive career. Jason Smyth MBE is an Irish retired sprint runner. He competes in the T13 disability sport classification as he is legally blind, with his central vision being affected by Stargardt's disease; he also competes in elite non-Paralympic competition. Jason also recently won Ireland's Dancing With The Stars.I wanted to speak to Jason about the role of faith in an elite mindset, and how his faith helped him to not only overcome significant obstacles but to become the fastest Paralympian in history.Some highlights from this episode include Jason's unique experience on Dancing With The Stars, how Jason avoided becoming a victim, and Jason's advice for overcoming obstacles with faith.--You can find Jason at the following links:- https://twitter.com/smyth_jason?lang=en- https://www.facebook.com/ParalympianJasonSmyth/?locale=en_GB- https://www.instagram.com/jason.smyth100/Follow For All The Saints on social media for updates and inspiring content:www.instagram.com/forallthesaintspodhttps://www.facebook.com/forallthesaintspod/For All The Saints episodes are released every Monday on YouTube, Spotify, Apple Podcasts and more:https://www.youtube.com/watch?v=TVDUQg_qZIU&list=UULFFf7vzrJ2LNWmp1Kl-c6K9Qhttps://open.spotify.com/show/3j64txm9qbGVVZOM48P4HS?si=bb31d048e05141f2https://podcasts.apple.com/gb/podcast/for-all-the-saints/id1703815271If you have feedback or any suggestions for topics or guests, connect with Ben & Sean via hello@forallthesaints.org or DM on InstagramConversations to Refresh Your Faith.For All The Saints podcast was established in 2023 by Ben Hancock to express his passion and desire for more dialogue around faith, religious belief, and believers' perspectives on the topics of our day. Tune into For All The Saints every Monday on YouTube, Spotify, Apple Podcasts, and more.Follow For All The Saints on social media for daily inspiration.

Peter Wallsten, a veteran newspaper journalist and head of investigative reporting at The Washington Post, talks to host Ben Shaberman about his evolving career as a reporter and editor and the impact that Stargardt disease has had on his journey and ambitions. Peter also reflects on recently receiving a Pulitzer Prize for his team's 15-part series on the role of the AR-15 assault rifle in mass shootings and how the weapon has become one of the best-selling firearms in the US.

The doctor said, “You are going blind, and there is no cure.” My mom burst into tears, and I remember thinking, “This can't be happening to me.” -Eavan O'Neill When she was only 13 years old, Eavan O'Neill started having trouble seeing the blackboard at school. A gifted athlete, she began missing the ball while playing lacrosse and soccer. One of her coaches suggested that she have her eyes checked. Unfortunately, glasses didn't do much to solve the problem. Throughout her teens, Eavan's eyesight continued to deteriorate, and in this interview, she admits that wishful thinking set in until one day, she mistook the moon for a street light and it was obvious something was very wrong. Diagnosed at 20 by Rachel Huckfeldt, MD, PhD, an opthalmologist in the Inherited Retinal Disorders Service at Mass Eye And Ear, with a rare and incurable condition called Stargardt disease, Eavan is now legally blind. In this interview, she recalls returning to St. Lawrence University after her diagnosis in January 2020, only to go home two months later to her family in Yarmouth, Maine, due to the pandemic. Distraught and uncertain about her future, she accepted an invitation from her neighbor to go for a run and discovered that running flipped a switch inside of her. Says Eavan: “Running has made me feel strong, happy, and capable again.” An experienced marathoner who can only see 4 feet in front of her, Eavan runs to raise awareness and funds for a cure for Stargardt disease. Now a Development Officer at Mass General Brigham, Eavan is determined to be a voice for anyone struggling with this rare disease: “I felt so isolated when I was first diagnosed. It was like diving off of a cliff into no-man's land. It's hard to find hope. That's what I want to be for people. Hope.” Although she still has “bad blind girl days,” Eavan looks on the bright side with her Instagram handle @bright.side_group. For 22 minutes of inspiration, just hit that download button. #blindness #stargardtdisease

For the May edition of Embers, we are elated to be joined by two amazing athletes and Mainers, Eavan O'Neill and Skyler Samuelson Espinoza. In 2020 Eavan was diagnosed with a rare genetic disease called Stargardt's Disease that causes vision loss. Following her diagnosis and the onset of the pandemic, Eavan took to the outdoors by running, which soon grew into a passion. A year later, Eavan ran the Maine Marathon, raising money for research to find treatment for genetic eye diseases, and her passion for long distances continues. Though initially a collegiate rower, Skyler found herself as a “pilot” on the United States' Paralympic Cycling team, following her success as an individual cyclist. As an athlete with unimpaired vision, Skyler teams up with a visually impaired athlete to race in tandem.

Join Sam from The Blind Life as he interviews Chris, a remarkable individual with an inspiring vision story. At the age of 24, Chris received a diagnosis of Stargardt disease, leading to legal blindness by his early thirties. Despite the challenges, Chris embarked on a transformative journey of self-discovery through cycling. From commuting to work to conquering 100-mile charity rides and tackling the rugged terrain of off-road mountain biking, Chris's resilience shines through. Now, he's preparing for his most ambitious adventure yet: the Tour Divide, a 2,700-mile self-supported mountain bike race from Canada to Mexico. Learn how Chris navigates the trails with low vision, overcomes obstacles, and finds strength in solitude. This is a story of determination, adventure, and living life to the fullest. Don't miss out on this incredible journey! Follow Chris's adventure with the hashtag #BlindCyclistJourney and share your own stories of resilience and adventure. Join the conversation and support Chris on his epic ride across America!

Cassie LovelockCassandra (Cassie) Lovelock is a Research Assistant at the ESRC Centre for Society & Mental Health at Kings College London and is also currently completing her PhD at the London School of Economics where she is conceptualising a theory of indirect lived experience in mental health research, service design/improvement and policy making. Cassie has hereditary neuropathy with a liability for pressure palsies (HNPP), a rare condition with similar symptoms to MS, and often uses a wheelchair.Her understanding and knowledge of disability rights is rooted in her lived experiences, and she has featured on Channel 4, The Huffington Post, Metro, and Evening star where she has sheds light on disability hate crime.Find Cassie on Social Media: @soapsub - Instagram and x.comYou can check out Cassie's work here: https://www.kcl.ac.uk/people/cassandra-lovelockTilly DowlerTilly is a disabled business owner who runs pre-loved clothing boutique Wanted Wardrobe (Studios 5b, Castle wall buildings, Clapgun St, Castle Donington, Derby DE74 2LE). Her shop is open to customers from Tuesday to Saturday. Tilly has Stargardt's Disease, a progressive condition affecting central vision.You can find Wanted Wardrobe on:Instagram: @wanted_wardrobe_Facebook: @wantedwardrobe1Vinted: @WantedWardrobe23TikTok: @wantedwardrobetillyOnline: www.wantedwardrobe.co.uk Visit Leonard Cheshire's website: https://leonardcheshire.org/Follow Leonard Cheshire on social: @LeonardCheshireGet in touch and let us know what you think of the episode: disabilitydownload@leonardcheshire.org

Kapil Bharti, PhD, a senior investigator and director of the Intramural Research Program at the National Eye Institute (NEI), talks with host Ben Shaberman about his clinical trial underway for an innovative cell therapy for geographic atrophy (advanced dry age-related macular degeneration) as well as a clinical trial of the drug metformin for Stargardt disease.

In the latest episode of the OIS podcast, host Dr. Rob Rothman delves into the transformative power of empathy with multi-Emmy award-winning actress and writer, Ellen Gould. Together, they explore the intersection of healthcare and storytelling, shedding light on the importance of patient-centered care and authentic narrative representation.Episode Highlights:Personal Journey: Ellen shares her journey living with Stargardt's disease and its profound influence on her perspective and creative endeavors.Adversity to Opportunity: Discover how Ellen turned personal challenges into opportunities for artistic expression and meaningful storytelling."Seeing Stars" Project: Get an inside look at Ellen's groundbreaking project, which amplifies the voices and experiences of individuals with visual disabilities.Authentic Storytelling: Rob and Ellen discuss the importance of authentic storytelling in portraying the real-life challenges and triumphs of people with disabilities.Future Outlook: Hear about Ellen's plans for the future and the ongoing impact of her work in promoting empathy and understanding.Tune in to this inspiring episode as Rob and Ellen celebrate resilience, compassion, and the power of empathy in action. Join the conversation and let empathy guide your journey towards connection and understanding.

Amy SP Wilson Are you ready?  Ready for whatever comes at you?   No one can answer “yes” 100% of the time.  But we can take steps to be prepared.  And Pushing Limits is here to help.   This week, Amy SP Wilson brings a wealth of ideas about the perennial problem of strangers who are intrusive when they try to help people with disabilities.  Amy SP Wilson is the CEO and founder of the Safety Positive Foundation, a nonprofit in the business of solving the personal safety needs of the blind and visually impaired community.   Serra Rae And, Serra Rea explains how emergency centers teamed up with local Independent Living Centers to help keep people with disabilities safe during the recent Southern California Floods.  Serra Rae is the Disability Disaster Access & Resources Program Manager for the California Foundation for Independent Living Centers.   Listen up; Stay Safe; Be Prepared!   Interviewers and producers: Chelsea Lesner-Buxton, Bonnie Elliot and Dominick Trevethan. Audio editing: Denny Daughters, Dominick Trevethan and Adrienne Lauby. Host: Adrienne Lauby More about Amy SP Wilson: Amy SP Wilson'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. Amy's eye condition, Stargardt's, diagnosed at the age of 10, prevented her from continuing her martial arts journey. Amy earned her first bachelor's degree in psychology, only to become a survivor of domestic violence shortly after. This was not her first experience as a survivor, and she 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.  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 Blind and Visually Impaired community, which did not align with her mission. Through the establishment of the Safety Positive Foundation, Amy shares her skills and empowers her community to embrace a safety-positive lifestyle.   More about Serra Rae:  While working with the County of San Bernardino in the Public Works department, Serra Rae learned a lot about wildland fires, flooding, and earthquakes.  Preparing for the next emergency and working as a Emergency Communications Specialist in the FireCorps, Serra attended American Military Academy and obtained a bachelor degree in Disaster and Emergency Management with a focus on Terrorism and Geological Disasters. Later becoming certified as an Emergency Management Specialist with California Specialized Training Institute. Serra Rae was introduced to the DDAR program while working at Rolling Start, an Independent Living Center member with CFILC. Working with the program at the center level gave her a good foundation to help the community open up the discussion of resources available to the community before, during and after an emergency or disaster event. The post Be Prepared – Disability – Pushing Limits – March 22, 2024 appeared first on KPFA.

Send us a Text Message.When life lands a crushing blow, where do you find the strength to stand back up? Our guest's incredible odyssey of grappling with Stargardt's Eye Disease reveals the deep reservoirs of human resilience and the miraculous power of faith to transform despair into triumph. A corporate career overshadowed by an invisible disability presents a battleground where insensitivity meets indomitable spirit, leading to a life-changing epiphany and the creation of a book that embodies the courage to reclaim one's narrative.Imagine the stillness of lockdown becoming the canvas for a masterpiece; this is precisely what unfolded for our guest, who penned not one but four novels amid the solitude imposed by the pandemic. The rhythm of music set the tempo for a disciplined exploration into the craft of writing, culminating in the euphoria of becoming a published author. Their journey sheds light on the value of authenticity and the strength found in community—lessons that resonate with anyone chasing the dream of leaving their mark on the world through the written word.The tapestry of life weaves together threads of family, faith, and the transformative power of personal challenges. Our guest opens up about the foundational influence of Auntie Shirley and the rich spiritual heritage that has been a beacon through the storms of life, including vision loss. In their ongoing quest, from writing to returning to acting school, they affirm that even when one sense dims, others may awaken, enriching the creative process and offering profound insight into the human experience and the spiritual truths that guide us.Welcome to The CJ Moneyway Show Podcast! The Podcast Show where we Unlock Potential, One Dream at a Time. Today, we have another guest whose journey is truly worth hearing. Sit back, relax, and enjoy the Moneyway experience. Don't miss out on CJ Moneyway's book, "Both Eyes Open and Both Eyes Shut." And get ready to pre-order his upcoming release, "The Issues of Life," coming soon. Moneyway aiming to inspire! Thank you for listening to The CJ Moneyway Show! Don't forget to share this episode with your friends, leave a comment, and drop a review. Be sure to tune in every Tuesday and Friday for more inspiring journeys. Who knows, your story might be next. Support the Show.The C. J Moneyway Showc.jmoneyway@gmail.comFacebook: Author Corwin JohnsonInstagram: c.j_moneywayYouTube: https://www.youtube.com/@themoneywayshow8493https://podcasts.apple.com/us/podcast/the-c-j-moneyway-show/id1707761906https://open.spotify.com/show/4khDpzlfVZCnyZ7mBuC4U1?si=kNrejibvQH-X3dOpRmu6AAhttps://youtube.com/playlist?list=PLVMwsp-9xLNaTBO4U97He0Ct_HldYbnAp&si=bmlctXwgxJe0cjzdWhether you're an entrepreneur, aspiring author, or just someone looking for a dose of motivation, this episode is packed with valuable insights and actionable advice. Don't forget to subscribe, rate, and review The CJ Moneyway Show on your favorite podcast platform. Your support helps us bring you more amazing guests and content each week! Support this podcast at — https://redcircle.com/the-c-j-moneyway-show/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

ACDN-01 is the only genetic medicine entering clinical development for Stargardt disease.

In the second hour of "Connections with Evan Dawson" on Tuesday, November 7, 2023, News 8's Adam Chodak shares his story of living with Stargardt disease, a rare eye condition that leads to blindness.

In this episode of White Canes Connect, hosts Simon and David sit down with the inspiring Manning brothers, Brad and Bryan, the visionaries behind Two Blind Brothers. Diagnosed with Stargardt's Disease in their youth, the duo dives deep into the origins of their unique apparel brand. While Two Blind Brothers isn't legally a 501(c)(3), they passionately channel their profits to fund research through several eye-related charities. Plus, discover the thoughtful touch they've added: a braille label indicating the color of each clothing piece. Dive in to learn about their journey and commitment to making a difference. Show notes at https://www.whitecanesconnect.com/084   More About Two Blind Brothers To learn more about the organization and see all that they have to offer, head to https://www.twoblindbrothers.com. You'll find links to all of their socials there, too. If you are sighted and want to see what shopping their site with Stargard's Disease is like, click the button on the lower left side of the screen. NFB of PA State Convention in Harrisburg The annual NFB of PA State Convention is November 9 - 12 at the Crowne Plaza in Harrisburg. Learn more at https://nfbofpa.org/state-convention/. Registration prices go up on October 1, so don't delay! Support the NFB of PA & White Cane Coffee 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. Give Us A Call We'd love to hear from you! We've got a phone number for you to call, ask us questions, give us feedback, or say, "Hi!" Call us at (267) 338-4495. You have up to three minutes for your message, and we might use it on an upcoming episode. Please leave your name and town as part of your message.  Follow White Canes Connect Apple Podcasts | Spotify | Amazon | YouTube Connect With Us If you've got questions, comments, or ideas, reach out on Twitter. We are @PABlindPodcast. You can also email us at WhiteCanesConnect@gmail.com.  

The Journey of a Major Airline Pilot. In this episode we discussed how Networking is key in this industry, and how to never give up, also some tips for all Aviators