Podcasts about Retinitis pigmentosa

Gradual retinal degeneration leading to progressive sight loss

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Retinitis pigmentosa

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Best podcasts about Retinitis pigmentosa

Latest podcast episodes about Retinitis pigmentosa

1000 w/ Ron Placone
Joslyn Sky (Overcoming Retinitis Pigmentosa) - 086

1000 w/ Ron Placone

Play Episode Listen Later May 6, 2025 50:29


Joslyn Sky is a singer, musician, and speaker. She has Retinitis Pigmentosa, or RP for short. This is a disease that causes progressive damage to the retina and often leads to limited vision or blindness. I saw Joslyn perform, and wanted to know her story. She uses her condition to educate others, and to create. We get into everything from religion to philosophy to politics, we have different points of view, which, hey, it'd be boring if we didn't.

Feeling This Life
Robotics and Coding for Our Kids (Babies too!) with Gina Fugate

Feeling This Life

Play Episode Listen Later May 5, 2025 43:58


Cathy spends time with Gina Fugate, computer science and technology educator, doctoral scholar, and teacher of the visually impaired.  Gina, whose vision is impacted by Retinitis Pigmentosa, is the coach of the DOT5UDOGS, the robotics team at The Maryland School for the Blind. Gina remembers her early life and how changes in technology over the years have impacted her and the students that she works with. Cathy connects coding and robotics to early learning and basic concepts that benefit all.  Gina shares her wisdom with families regarding technology and gives us a peek into what happens at robotics team meetings.    Jenny, Cathy, and Paige demystify some computer science terms that may be new to our listeners.  Jenny tells about a free program that makes literacy accessible for readers, and Paige shares more free resources that families can access.   Gina's website:  https://ginafugate.com/  Dolly Partin Imagination Library and American Printing House for the Blind (APH) collaboration (Braille Tales): https://www.aph.org/braille-tales/ https://www.aph.org/imagination-library-collaboration/  APH listing for Code and Go Mouse:  https://www.aph.org/product/accessible-code-and-go-mouse/  Amazon listing for Code and Go Mouse:  https://www.amazon.com/Learning-Resources-Robot-Activity-Pieces/dp/B01A5YMCH4/ref=sr_1_4?dib=eyJ2IjoiMSJ9.pNrgfjrwDzA3pq6I0C4QHpvi9QvxyK9-wiS4fKlfyTQP-CauncsPEos_fbBrbUIBebTcC3mrm87QmciC8Q5c9yL5h-oz2sMd82UeBbjW8si3NIVr2I15XGIknUZlZXS19PYjN92unvaFRbVYjf3hQLD5E8CmRU25vvqNsvt9ToSYTkXSTXAu6I3nfnwGWEn_idTQUKl31_FO51idhA8InYoH9w8jP35jWFMJBX_N1W73Jd0V0Nvq2cd-A5ygv2iCfiA31k8Dszc26qHPQYbGoq0kBL29y0Mgo_OYBLrFbEw.Oag3NzEObSy7QmBJavV86NagVRuu7wmOjYSXynF40fY&dib_tag=se&hvadid=617158356959&hvdev=c&hvlocphy=9014243&hvnetw=g&hvqmt=e&hvrand=7032082735960938102&hvtargid=kwd-373741283002&hydadcr=4120_13263594&keywords=code+%26+go+robot+mouse&mcid=701f6db9163b39e8bf25e4445f14f4b3&qid=1746114328&s=toys-and-games&sr=1-4  “Connecting Dots: A Blind Life” by Joshua A. Miele with Wendell Jamieson https://www.amazon.com/Connecting-Dots-Blind-Joshua-Miele/dp/030683278X?tag=googhydr-20&source=dsa&hvcampaign=books&gbraid=0AAAAA-byW6DVRTkFIq4qOZtXUOg5V4gEn&gclid=Cj0KCQjwt8zABhDKARIsAHXuD7Yvm8tNXIjM21hGLnZ95m44KpEuy9YwCvylUlaaFNky1onpy9ka1rwaAgiREALw_wcB  National Library Service equipment and materials:  https://www.loc.gov/nls/services-and-resources/equipment-for-nls-materials/  First LEGO League:  https://www.firstlegoleague.org/  Dash Robot:  https://store.makewonder.com/products/dash?srsltid=AfmBOor3MsMRYAATYxQ8ZlNcFuQ0ziavl3Kq-krKYz37BuPnNzxugdBV  Blocks4All iOS app:  https://apps.apple.com/us/app/blocks4all/id1446492589  Swift Playground iOS app:  https://developer.apple.com/swift-playground/  Joy Player:  https://www.aph.org/product/joy-player/  Seedings Book Angel Program:  https://www.seedlings.org/free-programs/  Braille Institute Special Collection, referred to in this episode as Dots for Tots:  https://www.brailleinstitute.org/library/special-collection/    Please give us your feedback using this survey link: ⁠https://educationutah.co1.qualtrics.com/jfe/form/SV_39OmBvMih6MlgNw⁠    Make a Donation to-  VIPS: ⁠https://secure.vips.org/np/clients/vips/donation.jsp?forwardedFromSecureDomain=1&campaign=495⁠   Get in touch with us!  Follow us on Facebook @Feelingthislifepodcast and Instagram @Feelingthislife  Email: ⁠feelingthislife@vips.org⁠ ⁠ ⁠www.vips.org 

BroadEye: An Ophthalmology Podcast
NAC Attack Clinical Trial: Exploring Antioxidants and Retinitis Pigmentosa with Dr. Peter Campochiaro

BroadEye: An Ophthalmology Podcast

Play Episode Listen Later Apr 8, 2025 46:16


In this episode of the BroadEYE Podcast, hosts Shawn Maloney and Dr. Bruno Fernandez dive into a fascinating discussion with Dr. Peter Campochiaro, a clinician-scientist at Johns Hopkins' Wilmer Eye Institute, about the potential of N-acetylcysteine (NAC) as a treatment for retinitis pigmentosa (RP). Dr. Campochiaro shares how his research journey began with unexpected findings in mouse models, revealing how excess oxygen in the retina—caused by the loss of rod photoreceptors in RP—leads to oxidative stress that damages surviving cone cells. This discovery paved the way for the NAC Attack clinical trial, a phase 3 study exploring whether NAC, a potent antioxidant, can slow cone degeneration and preserve vision in RP patients. The conversation covers the science behind NAC, its safety profile, and why it was chosen over other antioxidants like glutathione or CoQ10. Shawn, who lives with late-stage RP, brings a personal perspective, while Bruno, an ophthalmologist, digs into the broader implications for retinal diseases. Dr. Campochiaro also addresses practical challenges, like NAC's over-the-counter availability versus its regulated use, and cautions against self-medication without medical supervision. The episode offers hope for RP patients while emphasizing the importance of awaiting trial results, expected in a couple of years, to confirm NAC's efficacy and long-term safety.

In Touch
Retina UK's Sight Loss Survey; CSUN Assistive Technology Conference

In Touch

Play Episode Listen Later Mar 25, 2025 18:45


The charity Retina UK are seeking feedback from people with inherited sight loss conditions to learn how they can best support this community and feed into medical research. The charity primarily supports people who are living with genetic conditions, often with a progressive decline in sight. Some of these conditions are well known, such as Retinitis Pigmentosa, Usher Syndrome and Stargardt Disease and others are more rare, such as Leber congenital amaurosis. To participate in Retina UK's Sight Loss Survey, you can call their Helpline: 01280 821334. Or you can complete the survey online: surveymonkey.com/r/SightLossSurvey2025. The link to the survey can also be found on the Retina UK website. The CSUN Assistive Technology Conference is an annual showcase of the latest developments in assistive technology. The BBC's Senior North America Correspondent, Gary O'Donoghue and Emma Tracey, presenter of the BBC's disability and mental health podcast Access All, were there and they provide In Touch with an overview of the latest bits of tech that piqued their interest.Presenter: Peter White Producer: Beth Hemmings Production Coordinator: Liz PooleWebsite image description: Peter White sits smiling in the centre of the image and he is wearing a dark green jumper. Above Peter's head is the BBC logo (three separate white squares house each of the three letters). Bottom centre and overlaying the image are the words "In Touch" and the Radio 4 logo (the word ‘radio' in a bold white font, with the number 4 inside of a white circle). The background is a bright mid-blue with two rectangles angled diagonally to the right. Both are behind Peter, one is a darker blue and the other is a lighter blue.

Inner Edison Podcast by Ed Parcaut
From Blind Blogger to Accessibility Expert: Maxwell Ivey's Journey and Insights

Inner Edison Podcast by Ed Parcaut

Play Episode Listen Later Mar 18, 2025 31:57


In this enlightening episode of the Inner Edison Podcast, Ed is joined by Maxwell Ivey, affectionately known as "The Blind Blogger," to delve into the world of accessibility and innovation. Maxwell, who began losing his vision at the age of five due to retinitis pigmentosa, shares his inspiring journey of overcoming challenges and establishing himself as a recognized creative entrepreneur. Throughout the episode, Max discusses the current state of accessibility on the internet, revealing that only about 5% of online spaces are fully accessible and shares his personal experiences with navigating digital hurdles. He explains the importance of creating inclusive content, not just for compliance but also for enhancing user experience for everyone. Maxwell also talks about his work as a podcast host and accessibility advocate, working with companies to make their platforms more inclusive. Listeners will gain valuable insights into the steps necessary for making websites and digital content accessible, including practical tips and resources. With Maxwell's candid reflections and Ed's engaging interviewing style, this episode is both a call to action and a source of motivation for anyone interested in technology, entrepreneurship, or disability advocacy. Join Ed and Max for a conversation that challenges us to view accessibility not as a hurdle but as a path to innovation and inclusion for all. **Contact Ed Parcaut:** -

Dad to Dad  Podcast
SFN Dad To Dad 367 - Sebastien Pelletier of Montreal, Father of 4, 3 with Retinitis Pigmentosa & Featured In the NatGeo Documentary BLINK

Dad to Dad Podcast

Play Episode Listen Later Feb 28, 2025 50:54


Our guest this week is Sebastien Pelletier of Montreal, Canada a financial professional and father of four, three of whom were diagnosed with Retinitis Pigmentosa.  The Pelletier family was also featured in the National Geographic documentary BLINK.Sebastien and his wife, Edith Lemay, have been married for 14 years and are the proud parents of four children: Mia (13), Leo (11), Colin (9) and Laurent (7).  Mia, Colin and Laurent have been diagnosed with Retinitis Pigmentosa, a rare genetic disorder also known as Inherited Retinal Dystrophy (IRD) that causes loss of vision.  There is no known cure for IRD that will eventually lead to complete blindness.  In lieu of just providing their children with images, videos and movies to bolster their visual memories, the family embarked on an 18 month, 15 country journey around the world, which became the subject of the 2024 National Geographic documentary BLINK.  BLINK is more than a beautifully filmed travelogue to once-in-a-lifetime destinations, it's about the family's love, resilience and unshakeable sense of wonder to ensure that their uncertain future does not define their present.Today's episode is also a touching reflection about a couple's commitment to family and adventure, all on this episode of the SFN Dad to Dad Podcast.Show Links - LinkedIn –  https://www.linkedin.com/in/sebastien-p-62840b/Quebec Foundation for Visually Impaired – https://fondationdesaveugles.org/en/Blink Documentary Official Website - https://films.nationalgeographic.com/blinkEdith's Book - https://www.amazon.ca/Plein-leurs-yeux-gardent-m%C3%A9moire-ebook/dp/B0DGLLRD2KAQPEHV: https://www.aqpehv.qc.ca/ Mira: https://www.mira.ca/en/Fighting blindness: https://www.fightingblindness.org/MiraUSA Guide Dogs https://www.mirausa.orgRegister for the 6th Annual SFN Dads Virthual Conference on May 10, 2025: https://us02web.zoom.us/meeting/register/TLkN_ViJTTqnaK-M8pHPNA After registering, you will receive a confirmation email containing information about joining the meeting.Special Fathers Network -SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 800+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated.  There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA/videosPlease support the SFN. Click here to donate: https://21stcenturydads.org/donate/Special Fathers Network: https://21stcenturydads.org/  

T.K.'s:Chronicles of a Black Sheep Podcast
RETINITIS PIGMENTOSA with SPECIAL GUEST MELISSA JACKSON

T.K.'s:Chronicles of a Black Sheep Podcast

Play Episode Listen Later Feb 22, 2025 78:43


In this enlightening episode of T.K.'s Chronicles of a Black Sheep Podcast, we will discuss Retinitis Pigmentosa, a rare genetic disorder that affects the eyes. Join us as we welcome our special guest, Melissa Jackson, who shares her personal journey and experiences with this condition. Melissa's story is one of resilience and determination, offering hope and inspiration to those facing similar challenges. Tune in for an engaging conversation about the impact of Retinitis Pigmentosa, the importance of awareness, and the power of community support.

T.K.'s:Chronicles of a Black Sheep Podcast
RETINITIS PIGMENTOSA with SPECIAL GUEST MELISSA JACKSON

T.K.'s:Chronicles of a Black Sheep Podcast

Play Episode Listen Later Feb 22, 2025 78:43


In this enlightening episode of T.K.'s Chronicles of a Black Sheep Podcast, we will discuss Retinitis Pigmentosa, a rare genetic disorder that affects the eyes. Join us as we welcome our special guest, Melissa Jackson, who shares her personal journey and experiences with this condition. Melissa's story is one of resilience and determination, offering hope and inspiration to those facing similar challenges. Tune in for an engaging conversation about the impact of Retinitis Pigmentosa, the importance of awareness, and the power of community support.

Fight for Sight - Eye Research Matters
Understanding Retinitis Pigmentosa

Fight for Sight - Eye Research Matters

Play Episode Listen Later Feb 14, 2025 25:04


Discover how gene editing is advancing our understanding of Retinitis Pigmentosa. Keith Valentine caught up with Professor Majlinda Lako, Professor of Stem Cell Research at Newcastle University. In this wide-ranging discussion, she discusses her early career, fascination with the retina, and molecular scissors' role. Fight for Sight's funding has supported Malinda's work, and our chief executive and Majlinda share a sense of informed optimism for future treatments that will emerge from Professor Lako's work. 

BroadEye: An Ophthalmology Podcast
Leading with Vision: Angela Bonfanti's Journey to Transforming Accessibility at CNIB

BroadEye: An Ophthalmology Podcast

Play Episode Listen Later Jan 28, 2025 43:29


In this episode, we sit down with Angela Bonfanti, the first female CEO and President of the Canadian National Institute for the Blind (CNIB). Angela shares her personal and professional journey, the challenges and opportunities of leading a 106-year-old organization, and her vision for improving accessibility and inclusion for individuals with vision loss in Canada. About the Guest Angela Bonfanti, the CEO and President of CNIB, is a trailblazer in the accessibility and inclusion space. With over 13 years of dedicated service at CNIB in various leadership roles, Angela became the organization's leader in 2023, marking her 13th anniversary with the institute. She brings a deeply personal connection to her work, having grown up witnessing her father's journey with vision loss due to Retinitis Pigmentosa. Angela's leadership is defined by her commitment to systemic change, grassroots advocacy, and empowering individuals with vision loss through innovative programs and community-driven solutions. About the CNIB The Canadian National Institute for the Blind (CNIB) is Canada's leading organization dedicated to empowering people impacted by blindness and vision loss. Established in 1918, CNIB supports individuals across the country with programs focusing on education, employment, accessibility, and advocacy. From guide dog training to groundbreaking virtual services, CNIB aims to create a world without barriers for people living with vision loss. Under Angela Bonfanti's leadership, the CNIB continues to advance its mission of inclusivity and accessibility through collaboration and innovative strategies.

RNIB Conversations
S2 Ep882: A Sweet Giveaway From Annie's Cake Creations

RNIB Conversations

Play Episode Listen Later Jan 14, 2025 8:43


Annie Spooner is an owner of a cake making business in Colchester. She also happens to live with Retinitis Pigmentosa, or RP for short.  She spoke with our Paulina Kuchorew about her passion, her sight loss, and also shares how you can nominate someone for a sweet giveaway. You can follow Annie on social media by searching for "Annie's Cake Creations." Image shows the RNIB Connect Radio logo. On a white background ‘RNIB' written in bold black capital letters and underline with a bold pink line. Underneath the line: ‘Connect Radio' is written in black in a smaller font.

Conversations About Life
Retinitis Pigmentosa, Blindness w/ Todd

Conversations About Life

Play Episode Listen Later Dec 23, 2024 41:15


Todd started experiencing the loss of his peripheral vision as a young man.  That increased to blindness.  We talk about that experience and about Todd's thoughts about life. Todd  

UNNOTICED PODCAST
The Monterrey Witch Video, Darkest Moments In Television, Creepy Unsolved Mysteries & MORE!

UNNOTICED PODCAST

Play Episode Listen Later Dec 11, 2024 138:20


The Lens Pod
The Lens Newsletter November 24, 2024

The Lens Pod

Play Episode Listen Later Nov 27, 2024 6:14


Too busy to read the Lens? Listen to our weekly summary here! In this week's episode we discuss: A novel complement-inhibitor gene therapy showed reasonable safety and tolerability in a phase-one clinical trial for geographic atrophy from AMD Patients with Retinitis Pigmentosa have significantly higher rates of depression compared to the general population A study of Chicagoland children demonstrated increased rates of myopia progression during the COVID-19 pandemic, perhaps due to increased time spent on screens and indoors.

The More Sibyl Podcast
도전과 성장|The One with Sola Adewumi - On Thriving with Retinitis Pigmentosa: A Journey of Resilience & Breaking Generational Patterns: Episode 23 (2024)

The More Sibyl Podcast

Play Episode Listen Later Nov 11, 2024 67:36


The More Sibyl Podcast Presents: 도전과 성장|The One with Sola Adewumi - On Thriving with Retinitis Pigmentosa: A Journey of Resilience & Breaking Generational Patterns: Episode 23 (2024)Resilience is spelled, Sola Adewumi, AKA my cousin, with whom I am well-pleased!Now a third-year nursing student in Canada, Sola returns to the podcast to share her incredible journey. Despite living with Retinitis Pigmentosa—a genetic disorder that causes gradual retinal degeneration, leading to progressive vision loss and, eventually, blindness—and having a career in digital marketing, Sola felt a calling toward nursing and boldly pursued it. Now thriving in her studies, she reflects on her resilience, faith, and the immense growth she has experienced along the way. Her determination and strength have not only shaped her life but also profoundly impacted her family and inspired everyone around her.In this heartfelt episode, Sola opens up about the highs and lows of navigating a demanding academic environment with a rare eye condition. From the support she's received in school to the mental and emotional shifts that have empowered her, Sola's story emphasizes the power of resilience and faith. We also explore the importance of breaking generational patterns, facing emotional challenges, and cultivating a positive vision for the future. This episode is a must-listen for anyone seeking inspiration to overcome life's obstacles and discover joy and determination amid adversity.Tune in and be inspired by Sola's journey to keep moving forward, no matter what.

Experts InSight
Retinitis Pigmentosa Treatment and the Role of Vitamin A

Experts InSight

Play Episode Listen Later Oct 4, 2024 29:40


Drs. Jason Comander and Rachel Huckfeldt join host Dr. Ben Young to review management considerations for patients with retinitis pigmentosa (RP). The discussion highlights the winding story of nutritional supplementation recommendations for vitamin A, and the importance of reanalyzing data behind established care patterns. While the latest findings confirm that vitamin E supplementation should still be avoided, they no longer support any generalized neuroprotective effect of high-dose vitamin A for RP.  For all episodes or to claim CME credit for selected episodes, visit www.aao.org/podcasts.

Easy Ayurveda Podcast
Gurubodha 139: Retinitis Pigmentosa| How a drug works in Ayurveda? Half-life of medicines| Bulk of muscles – might not be sign of good health

Easy Ayurveda Podcast

Play Episode Listen Later Sep 26, 2024 51:50


Sign up to Easy Ayurveda Video Classes by clicking the link belowhttps://www.easyayurveda.com/video-classes/Video Course: “Ayurvedic food and Nutrition”https://www.easyayurveda.com/nutrition/Buy Tridosha Made Easy Bookhttps://www.easyayurveda.com/tridosha-made-easy-3/Buy Tridosha Made Easy Book in Spanish LanguageEl corazón de los doshas: Nuevo librohttps://www.easyayurveda.com/el-corazon-de-los-doshas/Click to know more about Easy Ayurveda Hospitalhttps://www.easyayurveda.com/hospital/Buy our new course on Marma Therapy Part 1https://www.easyayurveda.com/marma1Buy our new course on Marma Therapy Part 1Subscribe to Easy Ayurveda Video Classes https://www.easyayurveda.com/video-classes/Subscribe to our free Easy Ayurveda newsletter here (you can unsubscribe and stop them anytime) -  https://forms.aweber.com/form/58/2129766958.htm Buy our course on diabetes reversal, powered by Madhavbaug https://www.easyayurveda.com/diabetes Buy our online video course on Treatment of cardiac disorders with Ayurveda https://www.easyayurveda.com/heartMaster ECG in one week. Sign up for video course https://www.easyayurveda.com/ecgContact Dr. MB Gururaja BAMS MD (Ayu)https://www.easyayurveda.com/gururaja  Contact Dr. Raghuram YS BAMS MD (Ayu)https://www.easyayurveda.com/raghuram Buy Easy Ayurveda Ebooks https://www.easyayurveda.com/my-book Buy Easy Ayurveda Printed Books https://www.easyayurveda.com/books/

Cannabis Talk 101
Financial Fridays| Joslyn Sky & Ria Kid

Cannabis Talk 101

Play Episode Listen Later Sep 23, 2024 32:43 Transcription Available


Today on Financial Fridays, Tony K delves into the lives of Singer/Songwriter, JSky & Author/Poet Ria Kid! Hear all about Joslyn was born with Retinitis Pigmentosa, a genetic mutation in her eye making her blind in one eye !Add Joslyn on IG @officialjoslynsky. Also check out Ria on IG @byriakid & find her book, “The Muse of Manifestations”, on amazon! Cannabis Talk 101, “The World's #1 Source For Everything Cannabis”, made global history by becoming the first cannabis show to partner with iHeartMedia, on 4/20/2020. Thank you for listening & watching Cannabis Talk 101 with Christopher Wright, aka "Blue" the CEO and creator of Cannabis Talk 101 and the Cannabis Talk Network. & Joe Grande, former Co-Host on Big Boy's Neighborhood on Power 106 FM, On-Air with Ryan Seacrest on 102.7 KIIS FM in Los Angeles and The Dog House in the Bay Area on WILD 94.9 KYLD. FOX SPORTS, NBC SPORTS. Financial Fridays with Tony Kassaei, The Inside Investor, 40 TONS TALK, WITH ANTHONY SLIMBURG, CHRONIC HISTORY WITH HISTORY CONNOR V. Toking with the Stars with Chuckie & Marty, & on YouTube, IHeartRadio App, Spotify, & Apple Podcasts.See omnystudio.com/listener for privacy information.

Aftersight
Empowering Girls Through Education: Melodie Paubert Part 1

Aftersight

Play Episode Listen Later Jul 25, 2024 26:03


Summary Melody Paubert, an entrepreneur from Madagascar, shares her journey of growing up in a small town and eventually coming to the United States. She discusses her diagnosis of retinitis pigmentosa (RP) and her involvement in a nonprofit organization called Nufi Andruye, which provides access to education for girls in Madagascar. Melody also talks about her work as a disease intervention specialist and her passion for financial education. The episode ends with a reminder about an upcoming event and a call to share and subscribe to the podcast. Takeaways Growing up in a small town in Madagascar, Melody faced challenges in accessing education and opportunities. The nonprofit organization Nufi Andruye, started by Melody's mother, aims to provide girls in Madagascar with access to education and improve gender equality. Melody is involved in disease investigation as a disease intervention specialist at the Seattle King County Public Health Department. She is also an entrepreneur and is passionate about financial education and helping others improve their financial situations. The episode ends with a reminder about an upcoming event and a call to share and subscribe to the podcast. Chapters 00:00 Introduction and Solo Hosting 01:24 Guest Introduction and Growing Up in Madagascar 04:30 Diagnosis of Retinitis Pigmentosa and Coming to the United States 09:28 Starting the Nonprofit Organization Nufi Andruye 16:48 Meaning of Nufi Andruye and Empowering Girls Through Education 18:14 Educating Parents and Providing Life Skills Workshops 20:36 Supporting the Nonprofit and Call to Action 21:04 Melody's Full-Time Job and Entrepreneurship 25:12 Upcoming Event and Conclusion Thank you for listening to this episode of The Blind Chick! If you have any questions for Penn or Moses give us a call at 720-712-8856 or you can email us at feedback@aftersight.org

RNIB Connect
S2 Ep599: Bérénice Magistretti On Self-Acceptance And Stylish Canes

RNIB Connect

Play Episode Listen Later Jul 22, 2024 14:09


Bérénice Magistretti is a writer and disability activist with Retinitis Pigmentosa. She talked to Amelia about embracing her sight loss, building up to using a cane, and finding canes that makes her feel confident. Follow Bérénice on Instagram @berenicebagistretti . Image shows a black and white picture of Bérénice, who is a young white woman with mid-length black hair. She is sitting on a stool with her right leg propped up, her right elbow resting on it and her face resting on her knuckles. She is looking into the camera smiling, wearing a black top and white trousers. The background behind her is white.

Foundation Fighting Blindness
VISIONS 2024 | Clinical & Research Updates: Retinitis Pigmentosa

Foundation Fighting Blindness

Play Episode Listen Later Jul 19, 2024 86:57


Speakers: Robert Hyde, MD, PhD and Miranda Scalabrino, PhD This session will feature clinicans and researchers discussing recent updates for Retinitis Pigmentosa.

Dead America
Maxwell Ivey: Inspiring Journey of The Blind Blogger

Dead America

Play Episode Listen Later Jul 10, 2024 42:47


 https://podcasts.apple.com/us/podcast/the-whats-your-excuse-show/id1473384516  https://podmatch.com/guestdetail/1591379556893x428258685876874700  https://www.theaccessibilityadvantage.com/home    In this compelling episode of the Dead America Podcast, hostEd Watters interviews Maxwell Ivey, known as The Blind Blogger. Maxwell shareshis inspiring journey from growing up in a family of carnival owners tobecoming a life goals coach, digital media publicist, and accessibilityadvisor. They discuss the importance of education, overcoming adversity, andthe power of inclusivity in business and life. Maxwell sheds light on hisexperiences with blindness, blogging, and podcasting, emphasizing the need forbetter communication and accessibility. Tune in to learn from Maxwell'sremarkable story and gain valuable insights on inclusion and personal growth.     00:00 Introduction: The Power of Education  00:56 Meet Maxwell Ivey: The Blind Blogger  02:50 Overcoming Stigma and Embracing Inclusivity  03:56 Challenges and Communication in the DisabilityCommunity  11:26 Maxwell's Journey with Retinitis Pigmentosa  13:56 Life Lessons from the Carnival  21:53 From Carnival to Blogging and Podcasting  25:43 The Accessibility Advantage: New Beginnings  29:06 Reflections and Final Thoughts  38:35 Call to Action and Closing Remarks  

Dad to Dad  Podcast
SFN Dad to Dad 317 - Noel Fernandez Collott (82) of Ciego de Avila, Cuba A Retired Baptist Pastor & Disability Advocate, Went Blind at 30

Dad to Dad Podcast

Play Episode Listen Later Jun 28, 2024 47:02


In April 2024, our host David Hirsch traveled to Cuba with Joni & Friends, as one of 12 U.S. volunteers participating in a Wheels For The World Program, to fit and distribute 200+ wheelchairs to youth and adults, who might not otherwise experience mobility.  During his visit, he recorded two interviews with individuals connected to the disability community in Cuba. This is the the second of the two interviews.Toady's guest is Noel Fernandez Collott of Ciego de Avila, Cuba an 82 year old retired Baptist pastor who led seven churches during his career, who is one of the country's most well respected disability advocates and himself, went blind at age 30.Noel and his wife, Ornara, have been married for 58 years.  We also learn about how Retinitis Pigmentosa took his dad and grandfather's sight as well.Thirty years ago, Noel was the initial point of contact with Joni & Friends, the Agoura Hills, CA global Chrsitian disability ministry.  Since then there have been J&F Family Retreats and Wheels for the World programs in all 15 Cuban providences.Noel is also the author of the book (published in Spanish) entitled: Segun Los Circunstancias, which translated into English is: Living According To Circumstances.  The book is currently available  in Spanish on Amazon via Kindle and soon to be available in English.  We also learn about ACLIFIM a local NGO that serves the disability community. It's an uplifting story about overcoming disability and the power of the Holy Spirit all on this episode of the SFN Dad To Dad Podcast. Show Notes - WhatsApp - 53 52 449 967Email – fernolla2027@gmail.comJoni & Friends -  https://joniandfriends.org/Living According To Circumstances - https://www.amazon.com/Vivir-seg%C3%BAn-las-circunstancias-Spanish-ebook/dp/B0CQR9XJJ6/ref=sr_1_1?crid=DU5LY58FA1JM&dib=eyJ2IjoiMSJ9.vTCDcNLCV7_U0Z3oenOWXtKah6BZpDjOkT9YlWKfmug.5Bogv-4zgXWbCoiv4J7IQia54bpBaFqcU2XTSbDJfQo&dib_tag=se&keywords=noel+fernandez+collot&qid=1719589939&s=books&sprefix=noel+fernandez+collot%2Cstripbooks%2C98&sr=1-1ACLIFIM (Asociación Cubana de Personas con Discapacidad Físico - Motora -  https://www.aclifim.cu/Special Fathers Network - SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 700+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated.  There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA/videosPlease support the SFN. Click here to donate: https://21stcenturydads.org/donate/Special Fathers Network: https://21stcenturydads.org/SFN Dads Mastermind Group - https://21stcenturydads.org/sfn-mastermind-group/Find out about Horizon Therapeutics – Science and Compassion Working Together To Transform Lives. https://www.horizontherapeutics.com/

The RightWay Podcast
Joseph Burton - Hearts For Sight Foundation Pt.1

The RightWay Podcast

Play Episode Listen Later Jun 21, 2024 13:22


This Men's Mental Health Month, on the Pain to Power Podcast, Franco chats with Joseph Burton, Founder and Director of Hearts For Sight Foundation. Joseph's journey from foster care to becoming a wellness advocate for the visually impaired is truly inspiring. Despite the challenges of Retinitis Pigmentosa, he transformed his life through health and wellness, and higher education. Now, he leads Hearts For Sight, ensuring visually impaired people have access to essential health services. Tune in to hear pt.1 of Joseph's incredible story and his mission to break down barriers for the blind community. Watch this FULL episode on https://www.youtube.com/@therightwayfoundation/ To find out more about our programs visit www.therightwayfoundation.org    Guest: @heartsforsight

Zigzag & One
104: Now I See: losing her sight hasn't stopped her with Janet Eckles

Zigzag & One

Play Episode Listen Later Jun 12, 2024 27:16


Today's guest is Janet Perez Eckles. She is a speaker and the author of five books. We discussed excerpts from her memoir, Now I See: How God's Amazing Grace Transforms the Deepest Pain to Shining Joy. Janet Eckles grew up in Bolivia during the twelve years of the Bolivian revolution. She observed the grit and determination her mom and dad showed as they struggled to live during difficult circumstances. Janet internalized their response to challenge, which helped her tremendously when she learned she's inherited the gene for a progressive eye disease called retinitis pigmentosa. Janet was thirteen when the eye doctor shared this news with her parents. He predicted she wouldn't lose her sight until she was sixty years old.Janet met Gene, and they fell in love and were married. Three sons followed, which brought her much joy. Unfortunately, her eyesight began diminishing during her twenties. By her thirtieth birthday, Janet had completely lost her sight.  Gene struggled greatly with his wife losing her sight. When she shared with him that she was blind, he shared that he'd found someone else.Janet's world crashed down around her. A friend invited her to her church's healing service.  This became a turning point in Janet's story. Growing up Catholic, Janet recited prayers, but she didn't know Jesus. At that healing service, Janet didn't experience healing. But she met Jesus. Janet learned about Jesus' love, which caused her to realize how much she needed Jesus to take over every part of her life. Sometime later, Gene returned and asked forgiveness. They began repairing their marriage.Years later, Janet leaned hard on her faith in Jesus when their son Joe was murdered. Although the man was arrested on first degree murder charges, the jury found him not guilty.  Janet, Gene, and her other sons were devastated by the jury's decision.Janet and Gene's marriage survived many challenges, but after forty-two years they divorced. With God's guidance, Janet has processed and learned from the challenges she's fought to overcome. She shares the message of Jesus' victory in our lives with audiences across the nation.Notable quotes from this episode with Janet Eckles:"I refused to believe I was going blind. Those things don't happen to me . . . I still believe. God is going to heal me. Something's going to happen, and there's no way I could lose my sight completely.""I didn't know that while I could see physically, I was spiritually blind.""When we're going through the hardship, when we're going through the heartache, we need to remember God has all the pieces put together. He has a plan. He has a purpose . . . And all we have to do is trust Him."Bible verses:Matthew 6:33Psalm 46:10Romans 12:2Romans 8:28Proverbs 3:5-6Check out Amazon for Janet's books. Learn more about her and invite her speak by visiting her website.Connect with Janet Eckles on Facebook and Instagram.Send me a COMMENT or QUESTION!

Coffee Talk With John Papaloni
270. Visionary Leadership: Ben's Journey from Aerospace Engineer to Financial Advocate for Small Businesses

Coffee Talk With John Papaloni

Play Episode Listen Later May 21, 2024 50:36


Visionary Leadership: Ben's Journey from Aerospace Engineer to Financial Advocate for Small Businesses In this episode, we sit down with Ben, a former aerospace engineer at The Boeing Company who transitioned into a fractional Chief Financial Officer and financial services entrepreneur. Ben's journey is one of resilience and inspiration, overcoming the challenges of low vision due to Retinitis Pigmentosa to build Provident Financial Services, Ltd. Listen as Ben shares how his unique background and expertise in strategic accounting, private equity fund-level accounting, and financial consulting are driving the success of small businesses and start-ups across America. Discover his passion for empowering others with the financial intelligence they need to thrive and his mission to strengthen American communities through economic growth. Join us for a conversation about overcoming obstacles, making impactful transitions, and the importance of financial guidance for small businesses. Connect with Ben on LinkedIn to learn more about his work: www.linkedin.com/in/benrisser 

MavRadio.FM Podcast
Living in the Dark

MavRadio.FM Podcast

Play Episode Listen Later May 8, 2024 27:13


In this episode of “Emily's Stories Of Living In The Dark,” Emily talks with Alex France to discuss his vision loss and experiences as a blind person. Alex lives with a disease called Retinitis Pigmentosa, also known as R.P. Alex was born with this rare eye disease. Alex has had some challenges but has also had some great successes. This episode will provide details regarding R.P., what it is, and how it affects him. He also discusses his time running track and cross country, and his experience working for the Commission Of The Blind. It will also provide information regarding what the Commission is and contact information. We will also discuss how he has managed to overcome obstacles and how he has navigated such a visual world. These experiences have all contributed to making Alex the person he is today.   Statistics and more information regarding R.P. can be found at “Retinitis Pigmentosa” NationalEyeInstitute.gov.    

Sickboy
Legally Blind or Faking It? - Retinitis Pigmentosa

Sickboy

Play Episode Listen Later Apr 24, 2024 69:00


Sometimes, the world we see isn't just defined by light and shadows, but by the stories we tell and the voices we hear. Mara Hutchinson offers the fellas a candid glimpse into her life with Retinitis Pigmentosa (RP), a rare eye disease that affects the retina. She's lived a journey marked not just by challenges but also by profound resilience. Mara delves into how navigating the world with a white cane (or white stick, depending who you ask) is more than an exercise in mobility—it's a statement of independence and identity. In the wrap, the boys keep the visual disorders going with prosopometamorphopsia. If Picasso was a sociopathic god who designed people, he might have envisioned something like “propsy” as Jer puts it.Catch the full video version of this episode on YouTube.Follow Sickboy on Instagram, TikTok and Discord!

Sickboy
Legally Blind or Faking It? - Retinitis Pigmentosa

Sickboy

Play Episode Listen Later Apr 24, 2024 69:00


Sometimes, the world we see isn't just defined by light and shadows, but by the stories we tell and the voices we hear. Mara Hutchinson offers the fellas a candid glimpse into her life with Retinitis Pigmentosa (RP), a rare eye disease that affects the retina. She's lived a journey marked not just by challenges but also by profound resilience. Mara delves into how navigating the world with a white cane (or white stick, depending who you ask) is more than an exercise in mobility—it's a statement of independence and identity. In the wrap, the boys keep the visual disorders going with prosopometamorphopsia. If Picasso was a sociopathic god who designed people, he might have envisioned something like “propsy” as Jer puts it.Catch the full video version of this episode on YouTube.Follow Sickboy on Instagram, TikTok and Discord!

RNIB Connect
S2 Ep460: How does sight loss interact with autism and epilepsy?

RNIB Connect

Play Episode Listen Later Apr 16, 2024 5:59


Rachel Looby has multiple disabilities and conditions including Retinitis Pigmentosa, epilepsy and autism. She talked to Amelia about they interact and impact her life.  Image shows RNIB Connect Radio logo. 'RNIB' written in black capital letters over a white background and underlined with a bold pink line, with the words 'Connect Radio' underneath.

The Zero to Finals Medical Revision Podcast
Retinitis Pigmentosa (2nd edition)

The Zero to Finals Medical Revision Podcast

Play Episode Listen Later Apr 8, 2024 4:25


This episode covers retinitis pigmentosa.Written notes can be found at https://zerotofinals.com/medicine/ophthalmology/retinitispigmentosa/ or in the ophthalmology section of the 2nd edition of the Zero to Finals medicine book.The audio in the episode was expertly edited by Harry Watchman.

AT Banter Podcast
AT Banter Podcast Episode 359 - Mary Mammoliti

AT Banter Podcast

Play Episode Listen Later Feb 28, 2024 58:23


There is much rejoicing on the show this week as the Banter gang heads to their favorite place to talk about their favorite subject .. and if you guessed “the kitchen” to talk about “food”, you are clearly a regular listener! The rest of you, get your minds out of the gutter and listen as Lis, Ryan, and Rob welcome Mary Mammoliti, host of AMI's Dish With Mary to talk about, food, accessible cooking, and her own journey through vision loss after being diagnosed with Retinitis Pigmentosa.   Show Transcript https://atbanter.files.wordpress.com/2024/02/at-banter-podcast-episode-369-mary-mammoliti.pdf Show Notes Watch “Dish With Mary” on AMI Plus https://amiplus.ca/m/0/episode?seriesId=74X8SA9S Kitchen Cofession https://www.kitchenconfession.com AT Banter is brought to you by Canadian Assistive Technology, providing sales and training in Assistive Technology and Accessibility with over 30 years of knowledge and experience. Visit them online at www.canasstech.com or call toll-free 1-844-795-8324 or visit their Assistive Technology Showroom at 106 – 828 West 8th Avenue, Vancouver. Need repairs on your device? Chaos Technical Services offers service and support on almost any piece of Assistive Technology, while also providing parts and batteries. Visit them online at www.chaostechnicalservices.com or call 778-847-6840.

Aftersight
Living a Kick-Ass Life with a Disability

Aftersight

Play Episode Listen Later Jan 25, 2024 26:46


The Blind Chick Podcast: Exploring Strength, Overcoming Hurdles, and Embracing an Adventurous Lifestyle Would you like to give somebody a shout-out because they've done something awesome or have achieved a personal goal, or it's a holiday that you want to send them a special message? You can now purchase shout-outs at aftersight.org/shoutout. Receive 50% off by using the code LOVE at check out. When you purchase a shout-out, we will read it on one of our shows for the whole world to hear. Join us for an insightful episode of The Blind Chick, an Aftersight original podcast. Listen to inspiring stories of strength, overcoming hurdles, and embracing life's adventures despite visual impairment. A week prior we introduced a new feature, 'Shout-out', allowing listeners to share their experiences, and we're thrilled to have received our first response from a listener, who shared her empowering journey of increased self-awareness and independence. In this episode, we have an incredible guest on board - Charlie Kramer - a renowned disability life coach who empowers people with disabilities to lead fulfilling lives. Known for his catchphrase 'live kick-ass lives,' Charlie inspires us all to step into our true selves rather than assimilate. So join us as we discuss Charlie's unique approach, the difference between a life coach and a therapist, and the empowering choice of expressing a full identity. Enjoy listening! If you would like to follow along with the transcript of this show, please click on the link below. https://share.descript.com/view/HLX0pYrLzgL 00:00 Introduction to The Blind Chick Podcast 00:39 Engaging with Listeners: Shout Out Segment 01:05 Appreciating Listener's Feedback: Michelle's Story 02:20 Introducing the Guest: Charlie Kramer 03:07 Getting to Know Charlie: Personal Background 05:55 Charlie's Travel Recommendations 08:14 Charlie's Journey with Retinitis Pigmentosa 10:50 Charlie's Approach to Living with Vision Loss 18:50 Charlie's Unique Approach as a Life Coach 23:58 Connecting with Charlie: Social Media and More 25:34 Wrapping Up and Looking Forward to Part Two If you enjoyed this show, we would love to hear from you! You can reach us at feedback at after sight.org or call us on our voicemail line at 720-712-8856 as always thank you for listening to The Blind Chick.

Retina Synthesis
Gene Therapy for X-Linked Retinitis Pigmentosa

Retina Synthesis

Play Episode Listen Later Jan 4, 2024 18:56


We discuss the latest information on phase 2 trials of gene therapy for x-linked retinitis pigmentosa with Dr. Nadia Waheed, Chief Medical Officer of Beacon Therapeutics and Associate Professor of Ophthalmology at the New England Eye Center, Tufts University School of Medicine.

iCantCU Podcast
Celebrating Five Years of iCantCU

iCantCU Podcast

Play Episode Listen Later Dec 3, 2023 36:45


In this episode of iCantCU, I look back at five years of the podcast. I discuss what episodes have been the most popular and what countries have the most downloads. I play clips of the very first episode and the most downloaded episode. Whether this is your first time listening or you've been along for the entire ride, I am grateful for your support. I really appreciate it. Curious about episode 001? Give it a listen https://pdcn.co/e/traffic.libsyn.com/icantcu/iCantCU_Podcast_-_Introducing_David_Thats_Me.mp3. There was no editing of this episode or the first few dozen. Show notes at https://www.iCantCU.com/250  Correction Maybe I haven't improved over the last five years. The podcasting conference that I attended in Philadelphia in 2018 was Podcast Movement. Podfest is a conference I attended in 2020 in Orlando. Links Mentioned That Real Blind Tech Show Episode 142 - Dirty Pickle: https://podcasts.apple.com/us/podcast/episode-142-dirty-pickle/id1526258077?i=1000636449952  That Real Blind Tech Show on Apple Podcasts: https://podcasts.apple.com/us/podcast/that-real-blind-tech-show/id1526258077  Andrew Leland's Book The Country of the Blind: A Memoir at the End of Sight: https://amzn.to/46z0qT7 (Affiliate link) White Cane Coffee Company: https://whitecanecoffee.com/ref/KeystoneChapter/ (Affiliate link that benefits the Keystone Chapter) Learn About No Interest Loans On Assistive Tech From PATF: https://traffic.libsyn.com/whitecanesconnect/white_canes_connect_018.mp3. Top 5 Downloaded Episodes Celebrating My Mom's 90th Birthday: https://pdcn.co/e/traffic.libsyn.com/icantcu/iCantCU_Podcast_-_Celebrating_My_Moms_90th_Birthday__How_Im_Like_Her.mp3  Updated MacOS and You-Know: https://pdcn.co/e/traffic.libsyn.com/icantcu/icantcu-podcast-164.mp3  A Brooklyn Coffee Shop, Vegan Diner, And A Few Other Places On My Day In NYC: https://pdcn.co/e/traffic.libsyn.com/icantcu/iCantCU_Podcast_-_A_Brooklyn_Coffee_Shop_Vegan_Diner_And_A_Few_Other_Places_On_My_Day_In_NYC.mp3  Making Board Games More Accessible To Blind People Using Items You Already Own: https://pdcn.co/e/traffic.libsyn.com/icantcu/Making_Board_Games_More_Accessible_To_Blind_People_Using_Items_You_Already_Own.mp3.  Traveling On My Own: https://pdcn.co/e/traffic.libsyn.com/icantcu/iCantCU_Podcast_-_Traveling_On_My_Own.mp3  Learn More About Descript The transcript from this episode is done using Descript. Squadcast is now part of Descript, and I'm excited to try it when recording an interview. Try out Descript for free at https://www.descript.com/?lmref=Yw2dhQ. This is an affiliate link, so I'll earn a commission if you pay for the app. Thanks! Support iCantCU When shopping at Amazon, I would appreciate it if you clicked on this link to make your purchases: https://www.iCantCU.com/amazon. I participate in the Amazon Associate Program and earn commissions on qualifying purchases. The best part is, you don't pay extra for doing this! White Canes Connect Podcast Episode 089 In episode 089, Lisa and I talk to Andrew Leland, author of The Country of the Blind: A Memoir at the End of Sight. Andrew discusses his personal journey of vision loss from Retinitis Pigmentosa. He explains why he included some history of the organized blind movement and assistive technology interwoven with his journey. He also describes how he was the one to read the book for the audio version.  Find the podcast on Apple Podcasts https://podcasts.apple.com/us/podcast/white-canes-connect/id1592248709  Spotify https://open.spotify.com/show/1YDQSJqpoteGb1UMPwRSuI IHeartRadio https://www.iheart.com/podcast/263-white-canes-connect-89603482/ YouTube Https://www.youtube.com/@pablindpodcast White Canes Connect On Twitter Https://www.twitter.com/PABlindPodcast My Podcast Gear Here is all my gear and links to it on Amazon. I participate in the Amazon Associates Program and earn a commission on qualifying purchases. Zoom Podtrak P4: https://amzn.to/33Ymjkt Zoom ZDM Mic & Headphone Pack: https://amzn.to/33vLn2s Zoom H1n Recorder: https://amzn.to/3zBxJ9O  Gator Frameworks Desk Mounted Boom Arm: https://amzn.to/3AjJuBK Shure SM58 S Mic: https://amzn.to/3JOzofg  Sennheiser Headset (1st 162 episodes): https://amzn.to/3fM0Hu0  Follow iCantCU on your favorite podcast directory! Apple Podcasts: https://podcasts.apple.com/us/podcast/icantcu-podcast/id1445801370/  Spotify: https://open.spotify.com/show/3nck2D5HgD9ckSaUQaWwW2  Audible: https://www.audible.com/pd/iCantCU-Podcast-Podcast/B08JJM26BT  Heart: https://www.iheart.com/podcast/256-icantcu-podcast-31157111/ YouTube: https://www.youtube.com/davidbenj  Reach out on social media Twitter: https://www.twitter.com/davidbenj Instagram: https://www.instagram.com/davidbenj Facebook: https://www.facebook.com/davidbenj LinkedIn: https://www.linkedin.com/in/davidbenj Are You or Do You Know A Blind Boss? If you or someone you know is crushing it in their field and is also blind, I want to hear from you! Call me at (646) 926-6350 and leave a message. Please include your name and town, and tell me who the Blind Boss is and why I need to have them on an upcoming episode. You can also email the show at iCantCUPodcast@gmail.com.  

iCantCU Podcast
From Harrisburg to Hashtags: A Blind Podcaster's Unfiltered Experience

iCantCU Podcast

Play Episode Listen Later Nov 24, 2023 62:20


In this episode of iCantCU, join me as I dive into the frustrating world of social media accessibility, or the lack thereof. I'm unpacking the challenges I faced while trying to post on Instagram and the glaring accessibility gaps on TikTok. But that's not all! I also share my experiences from the NFB of PA State Convention in Harrisburg, PA. You won't believe the disappointment I encountered at the Crowne Plaza – their efforts on the hospitality side of things were shockingly poor, to say the least. If planning an event in Harrisburg, steer clear of the Crowne Plaza. And there's more – I recount the chaos with Amtrak during our journey back to Philadelphia. Picture this: over 20 blind individuals trying to board a train, and a situation so intense that Amtrak staff felt compelled to call for backup. It was a mix of issues from both ends, and I'm breaking it all down for you.  Show notes at https://www.iCantCU.com/249   Links Mentioned That Real Blind Tech Show Episode 141: https://thatrealblindtechshow.libsyn.com/episode-141-fahrvergnugen-humanity  That Real Blind Tech Show on Apple Podcasts: https://podcasts.apple.com/us/podcast/that-real-blind-tech-show/id1526258077  Andrew Leland's Book The Country of the Blind: A Memoir at the End of Sight: https://amzn.to/46z0qT7 (Affiliate link) Learn More About Descript The transcript from this episode is done using Descript. Squadcast is now part of Descript, and I'm excited to try it when recording an interview. Try out Descript for free at https://www.descript.com/?lmref=Yw2dhQ. This is an affiliate link, so I'll earn a commission if you pay for the app. Thanks! Support iCantCU When shopping at Amazon, I would appreciate it if you clicked on this link to make your purchases: https://www.iCantCU.com/amazon. I participate in the Amazon Associate Program and earn commissions on qualifying purchases. The best part is, you don't pay extra for doing this! White Canes Connect Podcast Episode 089 In episode 089, Lisa and I talk to Andrew Leland, author of The Country of the Blind: A Memoir at the End of Sight. Andrew discusses his personal journey of vision loss from Retinitis Pigmentosa. He explains why he included some history of the organized blind movement and assistive technology interwoven with his journey. He also describes how he was the one to read the book for the audio version.  Find the podcast on Apple Podcasts https://podcasts.apple.com/us/podcast/white-canes-connect/id1592248709  Spotify https://open.spotify.com/show/1YDQSJqpoteGb1UMPwRSuI IHeartRadio https://www.iheart.com/podcast/263-white-canes-connect-89603482/ YouTube Https://www.youtube.com/@pablindpodcast White Canes Connect On Twitter Https://www.twitter.com/PABlindPodcast My Podcast Gear Here is all my gear and links to it on Amazon. I participate in the Amazon Associates Program and earn a commission on qualifying purchases. Zoom Podtrak P4: https://amzn.to/33Ymjkt Zoom ZDM Mic & Headphone Pack: https://amzn.to/33vLn2s Zoom H1n Recorder: https://amzn.to/3zBxJ9O  Gator Frameworks Desk Mounted Boom Arm: https://amzn.to/3AjJuBK Shure SM58 S Mic: https://amzn.to/3JOzofg  Sennheiser Headset (1st 162 episodes): https://amzn.to/3fM0Hu0  Follow iCantCU on your favorite podcast directory! Apple Podcasts: https://podcasts.apple.com/us/podcast/icantcu-podcast/id1445801370/  Spotify: https://open.spotify.com/show/3nck2D5HgD9ckSaUQaWwW2  Audible: https://www.audible.com/pd/iCantCU-Podcast-Podcast/B08JJM26BT  Heart: https://www.iheart.com/podcast/256-icantcu-podcast-31157111/ YouTube: https://www.youtube.com/davidbenj  Reach out on social media Twitter: https://www.twitter.com/davidbenj Instagram: https://www.instagram.com/davidbenj Facebook: https://www.facebook.com/davidbenj LinkedIn: https://www.linkedin.com/in/davidbenj Are You or Do You Know A Blind Boss? If you or someone you know is crushing it in their field and is also blind, I want to hear from you! Call me at (646) 926-6350 and leave a message. Please include your name and town, and tell me who the Blind Boss is and why I need to have them on an upcoming episode. You can also email the show at iCantCUPodcast@gmail.com.  

Curiosity Daily
Steroid Psychopathy, Iceberg Crash, Stand Up Dizziness

Curiosity Daily

Play Episode Listen Later Nov 22, 2023 12:40


Today, you'll learn about the psychological toll of steroid use, a very slow moving penguin-iceberg collision, and why we sometimes get dizzy when we stand up. Steroid Psychopath “Male weightlifters who use steroids are more prone to psychopathology than those who do not.” by Vladimir Hedrih. 2023. “Clustering psychopathology in male anabolic-androgenic steroid users and nonusing weightlifters.” by Marie Lindvik Jorstad, et al. 2023. “Anabolic Steroids.” Cleveland Clinic. 2023. Iceberg Crash “45-mile-long iceberg slams into penguin refuge in Antarctica, almost causing ecological disaster.” by Harry Baker. 2023. “A Brief Iceberg-Island Encounter.” by Adam Voiland. 2023. “Chinstrap Penguin.” n.a. N.d. “Chinstrap Penguin.” National Geographic. N.d. Stand Up Dizziness “Why do you get dizzy if you stand up too fast?” by Anna Gora. 2023. “Orthostatic Hypotension.” NIH. 2023. “A Brief REview on the Pathological Role of Decreased Blood Flow Affected in Retinitis Pigmentosa.” by Yi Jing Yang. 2018. Follow Curiosity Daily on your favorite podcast app to get smarter with Calli and Nate — for free! Still curious? Get exclusive science shows, nature documentaries, and more real-life entertainment on discovery+! Go to https://discoveryplus.com/curiosity to start your 7-day free trial. discovery+ is currently only available for US subscribers. Hosted on Acast. See acast.com/privacy for more information.

Eins zu Eins. Der Talk
Dörte Maack, Speakerin

Eins zu Eins. Der Talk

Play Episode Listen Later Nov 20, 2023 38:59


Ein farbenfrohes Leben ohne Sehkraft, das geht gut, sagt Dörte Maack, die im frühen Erwachsenenalter erblindete. Retinitis Pigmentosa heißt diese seltene Erbkrankheit. Diese drastische Veränderung im Leben der früheren Artistin führte sie über kleine Umwege zu ihrem heutigen Job als erfolgreiche Speakerin.

White Canes Connect
An Interview with Andrew Leland, Author of The Country of the Blind: A Memoir at the End of Sight

White Canes Connect

Play Episode Listen Later Nov 19, 2023 72:29


In this episode of White Canes Connect, Lisa and David talk with Andrew Leland, author of The Country of the Blind: A Memoir at the End of Sight. Andrew tells us the story behind the title. He discusses his personal journey of vision loss from Retinitis Pigmentosa. He explains why he included some history of the organized blind movement and assistive technology interwoven with his journey. Andrew details how he was the one to read the book for the audio version. He mentions tools he uses daily and that he is learning Braille. Andrew talks about some of his other work, including stories in The New Yorker and Radiolab. Show notes at https://www.whitecanesconnect.com/089    About Andrew Leland Learn more about Andrew and sign up for his newsletter at https://www.andrewleland.org/. Andrew hosted a podcast called The Organist. Listen at https://www.kcrw.com/culture/shows/the-organist or your favorite podcast player. Read Andrew's articles in The Believer magazine at https://www.thebeliever.net/?s=leland. Links Mentioned In the Episode The Country of the Blind (audiobook): https://amzn.to/3R4erDZ The Country of the Blind (hardcover): https://amzn.to/49Gabln  Walking Alone and Marching Together: https://amzn.to/3G49iW7 Braille Institute Atkinson Hyperlegible font: https://brailleinstitute.org/freefont 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. 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.

Careers for the Blind
Episode 55 - Chief Strategy Officer at Abra Group - Michael Swiatek

Careers for the Blind

Play Episode Listen Later Oct 26, 2023 47:15


Michael is loosing his sight to Retinitis Pigmentosa. He was diagnosed in his teenage years, but it wasn't until after completing college, a MBA, and well into his career in the Aviation Industry that he became more open about his vision loss. Even after being more open about his vision loss, he continue to succeed in his career, and today is the Chief Strategy Officer at Abra Group, a holding company for two international airlines. Make sure to reach out to Michael on Linkedin. --- Send in a voice message: https://podcasters.spotify.com/pod/show/careersfortheblind/message

Not Your Average GOAT
20. Chad Bouton: Turning My Disadvantage into My Greatest Advantage (Part 1)

Not Your Average GOAT

Play Episode Listen Later Oct 22, 2023 47:02


Once naive to the true impact of his incurable, regressive disability, Chad Bouton would end up facing a turbulent storm of self-hatred before eventually finding calm and unwavering pride in himself. In part 1 of this conversation, Chad and I talk about what it was like growing up in a military family, the impact legacy medical technology had on his  misdiagnoses, and the devastating day his mother learned that both of her children had Retinitis Pigmentosa. Then, we dive into the emotional rollercoaster he experienced during his first vision dip at 16; the catastrophic intersection between his visual impairment and OCD plus anxiety; and how his second vision dip in college escalated his negative disability identity to absolute disdain on the verge of suicide.

Dr.Future Show, Live FUTURE TUESDAYS on KSCO 1080
32 Future Now Show - Bennu Asteroid Return, Egyptian Synchronistic Activations, Bruce Lipton Navigates the Field, Firebot Saves Lives, 'Be My AI' for the Blind, Stem Cells regenerate the eye in treating RP, AI and the Writers

Dr.Future Show, Live FUTURE TUESDAYS on KSCO 1080

Play Episode Listen Later Sep 29, 2023


Listen Now to 32 Future Now Bennu Asteroid Return Its a grand time for NASA, with their first successful return from space of a robotic craft carrying samples from Bennu, a near Earth asteroid that may have an impact with our planet in the not-to-distant future.  Our scientists are excited about the what this pristine payload of space rubble may reveal about the formation of our solar system, billions of years ago, and perhaps it may also contain clues as to the origin of biological life. Hey, maybe we came from it, when it passed by Earth billions of years ago!   Bennu Asteroid Return Capsule after landing in the Utah desertThis week we also report on the Egyptian adventures of our cosmic sister, Debra Giustri, as she tours and activates the ancient sites of Egypt with a 100 strong crew! What do we mean by activation?  Track her adventures here. And this week in Future News, we report on Firebot, the Fireman’s trusty bot, Bruce Lipton on energy, “Be My AI” and Stem cell treatment for those dealing with blindness related to Retinitis Pigmentosa.  We also explain how AI was part of the recent Writer’s Strike.  Enjoy! 

Inform & Connect: An American Foundation for the Blind Podcast
Inform & Connect, season 4, Episode 5 -- An Interview with Andrew Leland

Inform & Connect: An American Foundation for the Blind Podcast

Play Episode Listen Later Sep 28, 2023 51:42


https://www.andrewleland.orgIn this episode of the Inform & Connect podcast, Melody and Tony welcome Andrew Leland, author of the recently released book The Country of the Blind: A Memoir at the End of Sight, available through Penguin/Random House. Leland's book, which is part memoir and part cultural breakdown of blindness throughout history, shares his experiences loosing his sight from Retinitis  Pigmentosa, commonly referred to as RP. From the publisher: “A witty, winning, and revelatory personal narrative of the author's transition from sightedness to blindness and his quest to learn about blindness as a rich culture all its own.”  Andrew breaks down the driving themes throughout his book, and embarks on a discussion with Melody and Tony on the many shared experiences that others who are blind or low vision face each day. Visit Andrew's website to learn more about the book and his other creative and informative projects. Enjoy this episode? Be sure to like and subscribe from wherever you listen to podcasts. Inform and Connect is a production of The American Foundation for the Blind (AFB). Consider making a contribution today to help AFB create a world of no limits for people who are blind or have low vision.

The See-Through Podcast
Andrew Leland (Author of "The Country of the Blind")

The See-Through Podcast

Play Episode Listen Later Aug 29, 2023 91:51


Episode 093 | Andrew Leland joins the podcast! In this episode, Andrew talks to Lance about his highly acclaimed new book "The Country of the Blind: A Memoir at the End of Sight" and how living with blindness has not only inspired his writing but his perception of life, politics, and society. SEE-THROUGH is hosted by Lance Johnson. Based in New York City, Lance is a professional video editor living with the rare degenerative eye disease - Retinitis Pigmentosa or "RP” for short. In most cases, RP causes legal-blindness by the age of 40. Now at the age of 33, Lance uses SEE-THROUGH as his platform to explore his inevitable future of blindness.  ------------------------- SUPPORT SEE-THROUGH: Merch: https://seethroughpod.com/merch ------------------------- ANDREW LELAND LINKS: Buy His Book: https://www.penguinrandomhouse.com/books/635964/the-country-of-the-blind-by-andrew-leland/ Website: https://www.andrewleland.org/ Instagram: https://www.instagram.com/quailty ------------------------- SEE-THROUGH LINKS: YouTube: https://bit.ly/3JRSPEO Instagram: https://instagram.com/seethroughpod TikTok: https://www.tiktok.com/@seethroughpod Twitter: https://twitter.com/seethroughpod Facebook: https://www.facebook.com/seethroughpod Website: https://www.seethroughpod.com/

The See-Through Podcast
Lex Gillette (Athlete & Speaker)

The See-Through Podcast

Play Episode Listen Later Aug 17, 2023 52:31


Episode 092 | Lex Gillette returns to the podcast! In this episode, Lex talks to Lance about his new book "No Need For Sight When You Have Vision: What Blindness Can Teach Us About Risk and Leadership", what it's like to be the best totally blind long and triple jumper in the history of the U.S. Paralympic movement, his current training and expectations for the upcoming 2024 Paralympic games in Paris, and Lex shares his reasons for being both an author and a motivational speaker! SEE-THROUGH is hosted by Lance Johnson. Based in New York City, Lance is a professional video editor living with the rare degenerative eye disease - Retinitis Pigmentosa or "RP” for short. In most cases, RP causes legal-blindness by the age of 40. Now at the age of 33, Lance uses SEE-THROUGH as his platform to explore his inevitable future of blindness.  ------------------------- SUPPORT SEE-THROUGH: Merch: https://seethroughpod.com/merch ------------------------- LEX GILLETTE LINKS: Lex's New Book: https://www.lexgillette.com/shop Website: https://www.lexgillette.com/ Instagram: https://www.instagram.com/lexgillette ------------------------- SEE-THROUGH LINKS: YouTube: https://bit.ly/3JRSPEO Instagram: https://instagram.com/seethroughpod TikTok: https://www.tiktok.com/@seethroughpod Twitter: https://twitter.com/seethroughpod Facebook: https://www.facebook.com/seethroughpod Website: https://www.seethroughpod.com/  

I AM BIO
Is Space the Next Frontier for Biotech? (Redux)

I AM BIO

Play Episode Listen Later Aug 1, 2023 27:18


The International Space Station has been orbiting in lower earth since 1998 and has been continually inhabited since November 2000. The ISS was originally conceived as a staging base for future missions into deep space. As it turns out, lower earth orbit is an ideal setting for scientific research, from physics and meteorology to astronomy and the life sciences. In this episode we talk with three scientists whose projects are using lower earth orbit to deepen our knowledge of biotechnology and its benefits for mankind.

The See-Through Podcast
Andy Ogg (As The Light Dims): Vacationing as a Blind Man!

The See-Through Podcast

Play Episode Listen Later Aug 1, 2023 66:01


Episode 091 | Andy Ogg returns to the podcast! In this episode, Andy talks to Lance about how he navigated his recent family vacation to Hawaii as a blind man! Andy shares some tips on how he utilized his white cane on the beach, how to ease the anxiety that comes with traveling, how his sighted wife and daughters learned to guide him, and much more! SEE-THROUGH is hosted by Lance Johnson. Based in New York City, Lance is a professional video editor living with the rare degenerative eye disease - Retinitis Pigmentosa or "RP” for short. In most cases, RP causes legal-blindness by the age of 40. Now 32, Lance uses SEE-THROUGH as a platform to explore his inevitable future of blindness. ------------------------- SUPPORT SEE-THROUGH: Merch: https://seethroughpod.com/merch ------------------------- ANDY OGG LINKS: Instagram: https://www.instagram.com/andyogg As The Light Dims (Blog): https://www.asthelightdims.com/ ------------------------- SEE-THROUGH LINKS: YouTube: https://bit.ly/3JRSPEO Instagram: https://instagram.com/seethroughpod TikTok: https://www.tiktok.com/@seethroughpod Twitter: https://twitter.com/seethroughpod Facebook: https://www.facebook.com/seethroughpod Website: https://www.seethroughpod.com/

Eyes On Success with hosts Peter and Nancy Torpey
2330 Navigating the Transition to Sight Loss (Jul. 26, 2023)

Eyes On Success with hosts Peter and Nancy Torpey

Play Episode Listen Later Jul 26, 2023 28:32


2330 Navigating the Transition to Sight Loss (Jul. 26, 2023) Show Notes In his new book “The Country of the Blind: A Memoir At the End of Sight”, author and audio producer Andrew Leland chronicles his slow progression from sightedness to blindness due to Retinitis Pigmentosa. Hosts Nancy and Peter Torpey talk with Andrew about … Continue reading 2330 Navigating the Transition to Sight Loss (Jul. 26, 2023) →

The See-Through Podcast
dj B (Legally Blind DJ)

The See-Through Podcast

Play Episode Listen Later Jul 11, 2023 66:36


Episode 090 | Bridget Frank (dj B) joins the podcast! In this episode, Bridget talks to Lance about being a legally blind female DJ, the origins of her DJing career, her eye condition stargardts, her passion for space and aliens, and she shares some visually impaired fitness tips for those who want to start a gym routine.   SEE-THROUGH is hosted by Lance Johnson. Based in New York City, Lance is a professional video editor living with the rare degenerative eye disease - Retinitis Pigmentosa or "RP” for short. In most cases, RP causes legal-blindness by the age of 40. Now 32, Lance uses SEE-THROUGH as a platform to explore his inevitable future of blindness.  ------------------------- SUPPORT SEE-THROUGH: Merch: https://seethroughpod.com/merch ------------------------- DJ B LINKS: Instagram: https://www.instagram.com/djb_official Linktree: https://linktr.ee/djb_official ------------------------- SEE-THROUGH LINKS: YouTube: https://bit.ly/3JRSPEO Instagram: https://instagram.com/seethroughpod TikTok: https://www.tiktok.com/@seethroughpod Twitter: https://twitter.com/seethroughpod Facebook: https://www.facebook.com/seethroughpod Website: https://www.seethroughpod.com/

I AM BIO
Is Space the Next Frontier for Biotech?

I AM BIO

Play Episode Listen Later Apr 25, 2023 27:18


The International Space Station has been orbiting in lower earth since 1998 and has been continually inhabited since November 2000. The ISS was originally conceived as a staging base for future missions into deep space. As it turns out, lower earth orbit is an ideal setting for scientific research, from physics and meteorology to astronomy and the life sciences. In this episode we talk with three scientists whose projects are using lower earth orbit to deepen our knowledge of biotechnology and its benefits for mankind.