Podcasts about Usher syndrome

It's easy to understand why Reggie "Bird" Sorensen is so beloved by the public and the people around her. From winning Big Brother twice, to connecting with people on this years I'm A Celebrity Get My Out Of Here Australia, you can always rely on Reggie to bring the laughs no matter how dark the situation. But Reggie’s faced more challenges than most, from growing up in Tassie with her mum's struggles with schizophrenia to her own diagnosis of Usher Syndrome, which has left her navigating the world with pinhole vision. To top it all off, her youngest, Lucas, lives with cystic fibrosis. Despite this, Reggie makes sure she's the best mum to Mia and Lucas by making the most of what she's got and cracking a few laughs along the way. Support Reggie by following her on social media: YouTube https://www.youtube.com/@reggievision_tv Instagram https://www.instagram.com/reggiebirdbb/?hl=en BUY OUR SMELLY T SHIRTS HERE https://www.twodotingdads.com/category/all-products Buy our book, which is now available in-store! https://www.penguin.com.au/books/two-doting-dads-9781761346552 If you need a shoulder to cry on: Two Doting Dads Facebook Group: https://www.facebook.com/groups/639833491568735/ YouTube: https://www.youtube.com/@TheTwoDotingDads Instagram: https://www.instagram.com/twodotingdads/ TikTok: https://www.tiktok.com/@twodotingdads See omnystudio.com/listener for privacy information.

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.

Reading Vikas Joshi's book "My Name is Cinnamon," focusing on the last chapter, "Chapter 17: Going Home." Vikas shared insights into the book's creation, including the integration of Usher Syndrome and the emotional journey of the protagonist, Cinnamon. The discussion highlighted the importance of early disclosure of adoption to children and the challenges of bullying. Vikas emphasized the significance of community in his writing and provided advice for aspiring authors, stressing regular writing and resilience. The session concluded with a group photo and a reflection on the book's themes.In the second part of the session Sandeep reads Chapter 12: Crowd Intelligence from The Inner Life of Animals by Peter Wohlleben, and there is lots to reflect about bees, insect behviour and animal life:* Collective Behavior* How do animals benefit from collective decision-making, and what are some examples from this chapter?* Survival & Adaptation* In what ways does crowd intelligence help animals survive in the wild? Can you think of a situation where acting alone might be more beneficial?* Comparison to Human Society* How does the concept of crowd intelligence in animals compare to human group behavior, such as teamwork or social decision-making?* Ethical & Environmental Considerations* What can humans learn from animal crowd intelligence when it comes to solving problems like climate change or resource management?* Personal Reflection* Have you ever experienced a moment where working as a group led to a better outcome than working alone? How does this relate to the examples in the chapter?Sandeep Dutt provided an update on the progress and schedule of "My Good School," a comprehensive educational program. The school hosts various activities on different days of the week: master classes on Sundays, teacher sessions on Saturdays, book readings on Fridays, poetry on Thursdays, music on Tuesdays, and art on Mondays.The annual fee for the program is 2,500 rupees, which offers a total of 160 hours of learning. Additionally, the program includes a structured internship, a fellowship for teachers, and various workshops. They also share their learning experiences through newsletters, blogs, podcasts, and a YouTube channel. The My Good School Sunday session concluded with a video of the Waggle dance performance and the My Good School School. Check our our Joy Of Learning Diaries at: www.JoyOfLearningDiaries.com.Thanks for reading Good Schools India Journal! This post is public so feel free to share it. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit www.gsi.in

What’s it like to live with Usher syndrome, a condition that causes both progressive vision loss and deafness? "I really, really struggle with the fact that my hearing loss is almost a hidden disability?" In this episode, Malaine Robinson shares her experience of adapting to life with dual disabilities, from early diagnosis to becoming a guide dog handler and falling in love with her 'partner in crime' Dessi. What You’ll Learn: The challenges of navigating daily life with Usher syndrome. How guide dogs provide independence and mobility support. The role of technology in accessibility and communication. Malaine’s career journey and the adjustments she’s made along the way. Her take on accessible dining and why it matters. Whether you’re interested in the responsibility of owning a guide dog, or just want to hear a firsthand account of living without sight and sound, this episode offers a practical look at the challenges and solutions that shape Melanie’s day-to-day life. Want to work with Mel? Check out the links below! LinkedIn: https://www.linkedin.com/in/melaine-robinson-42068449/ Speaker Reel: https://www.youtube.com/watch?v=csXzL9f4Dz4 Watch the Full Episode with Captions Here: https://youtu.be/Ohd6IdrZhaw Grab our first merch release at our website Session in Progress.https://fromyourpocket.com.au/work/listenable/merch Recorded, edited and produced by Angus' Podcast Company: www.sessioninprogress.com.auSee omnystudio.com/listener for privacy information.

Too busy to read the Lens? Listen to our weekly summary here! In this week's episode we discuss Extent of optic nerve and optic nerve sheath MRI enhancement may predict visual outcomes in first episodes of MOG optic neuritis. A retrospective cohort study finds that topical pilocarpine use may increase the risk of retinal detachment. A new study used animal models to test safety and toxicity profiles after subretinal injection of a gene therapy for type 1 Usher Syndrome. Fluctuations in blood pressure are associated with faster visual field progression in glaucoma.

JMo sits down with Reggie Bird, the only two-time winner of Big Brother Australia, to explore her powerful journey with mental health. Reggie opens up about her experiences growing up with a mother suffering from paranoid schizophrenia, her own battles with depression, and the challenges of navigating life with Usher Syndrome. They dive into the stigmas surrounding mental illness, the struggles of motherhood, and the strength it takes to push forward in the face of adversity.  Resources Call Lifeline anytime on 13 11 14. Send a text to Lifeline at 0477 131 114. Support This series is proudly supported by ⁠BYD⁠, ⁠Vittoria Coffee⁠ and ⁠Chemist Warehouse⁠ The BYD SHARK 6 is almost here!  ⁠bydautomotive.com.au/shark⁠ Vittoria Coffee offers Fast Delivery Australia Wide ⁠vittoriacoffee.com⁠ Chemist Warehouse, your go-to destination for all things health and wellbeing Proudly produced in the⁠ ⁠⁠⁠⁠⁠Pro Podcast Studios⁠⁠⁠⁠⁠

Send us a textExperience the extraordinary journey of Jeff Hardaway and Trina Nation, as they redefine the limits of running against all odds. Jeff, navigating life with Usher Syndrome, has transformed from a sedentary lifestyle to an inspiring marathon runner. His incredible story reveals how support from his wife, Amy,  and learning to run with a guide opened new doors, leading him to tackle the iconic Habanero 100 in Texas. Meanwhile, Trina, a passionate trail runner turned guide from Wyoming, stepped up to help Jeff conquer his first marathon at the Alaska Prince of Wales Marathon. Their shared adventures highlight the power of perseverance and community strength when facing life's challenges.Join us as Jeff and Trina recount their unique running experiences, from the unpredictable Mayor's Marathon in Anchorage to the rugged trails of Prince of Wales Island. Discover how Jeff's innovative use of a mobility cane with his guide showcased resilience on the toughest terrains, while Trina's transition from road to trail running illuminated the vibrant racing communities in Alaska and beyond. Together, they emphasize the importance of overcoming fears, the transformative role of guides for visually impaired runners, and the deep camaraderie that makes every finish line a shared victory. This episode promises inspiration and insight into the world of marathon and trail running, brought to life through their compelling narratives. You can reach out to us at:https://coffeycrewcoaching.comemail: Carla@coffeycrewcoaching.com FB @ Over the Next Hill Fitness GroupIG @coffeycrewcoaching.comand Buy Me a Coffeehttps://www.buymeacoffee.com/Carlauhttps://hydra-patch.com/discount/OTNH10https://rnwy.life code: OTNH15https://jambar.com code: CARLA20

The drug is the first USH3 treatment to move into a human study.

On this episode, Mara concludes her chat with Ashley, her friend born with Usher Syndrome, as they discuss the challenges faced by a disabled person in the dating world, how a workplace can be a better ally to disabled employees, and the value in speaking your truth. USEFUL LINKS:Usher Syndrome: https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/usher-syndromeTraining Seeing Eye Dogs: https://www.seeingeye.org/puppies-dogs/seeing-eye-dogs/training.htmlHow Cochlear Implants Work: https://www.mayoclinic.org/tests-procedures/cochlear-implants/about/pac-20385021 Hosted on Acast. See acast.com/privacy for more information.

Speakers: David Corey, PhD and Benjamin Bakall, MD, PhD This session will feature clinicans and researchers discussing recent updates for Usher Syndrome.

In Episode 169, Ben chats with Catarina Rivera, founder of Blindish Latina, a platform smashing disability stigmas through storytelling and advocacy.  As a Latiné woman who has lived with disability all her life, she brings a deep understanding of intersectionality to conversations surrounding disability. She wore hearing aids from a young age but did not know why she was hard of hearing. At 17, she was diagnosed with Usher Syndrome which includes a progressive vision disability due to retinitis pigmentosa as well as a hearing disability. She has a BA from Duke University, an MSEd from Bank Street College of Education, and an MPH from Hunter College. Catarina is a Certified Professional in Accessibility Core Competencies (IAAP).    Contact: https://www.instagram.com/blindishlatina/?hl=en https://www.catarinarivera.com/ http://twitter.com/catarinarivera http://www.facebook.com/blindishlatina http://www.linkedin.com/in/catarinarivera https://www.youtube.com/@CatarinaRivera Links: Catarina's TED Talk https://www.youtube.com/watch?v=wbXxhuraJsE ABC News Interview https://abcnews.go.com/Lifestyle/video/activist-social-media-fight-stigmas-blindness-deafness-94359608

The Usher Syndrome Coalition is the core of the global Usher syndrome community, working to connect those living with Usher syndrome to resources, research, and each other. The Coalition uses the power of two data collection tools to build the community, leading to a better understanding of Usher syndrome, improved quality of life, and treatments for hearing, vision, and balance issues associated with Usher. https://www.usher-syndrome.org/

Join host Paul Johnson on The Optimistic American as he explores the profound journey of Rebecca Alexander, who lives with Usher Syndrome—a rare genetic disorder that affects hearing and vision. In this insightful episode, Rebecca, an author and psychotherapist, delves into her diagnosis, the emotional rollercoaster that followed, and her extraordinary endeavors, including climbing Mount Kilimanjaro and writing her impactful book, "Not Fade Away." Discover how Rebecca turns challenges into opportunities for growth and helps others along the way. Topics Discussed in the Video: Diagnosis and Emotional Journey: Rebecca shares her initial experiences of being diagnosed with Usher Syndrome and the complex emotions that accompany learning about one's progressive disability. Resilience Through Highs and Lows: Explore Rebecca's experiences with the ups and downs of living with a degenerative condition, including how she manages personal and professional challenges. Writing "Not Fade Away": Rebecca discusses the motivation behind her book, aimed at empowering those with similar challenges and broadening public understanding of Usher Syndrome. Adventure and Achievement: Hear about Rebecca's inspiring climb up Mount Kilimanjaro, using it as a metaphor for overcoming seemingly insurmountable obstacles in life. The Dynamics of Help: Delve into Rebecca's perspectives on giving and receiving help, the importance of community support, and the importance of maintaining humility and accountability when interacting with others. Learn more about The Optimistic American by checking out our website! https://www.optamerican.com

Join host Deadair Dennis Maler as we dive into the comedy and off-stage life of Mitch Shapiro, a comedian who is blind and hard of hearing due to Usher syndrome, and an advocate for those with disabilities. Mitch shares his inspiring journey living with Usher syndrome, from traveling in a motorhome to discussing the challenges and joys of cochlear implants. His story sheds light on the importance of open dialogue about disabilities and mental health. Tune in as Mitch reflects on his experiences founding Help America Here, navigating the comedy scene, and finding humor in life's struggles.

Australia fell in love with Reggie Bird when she took out the 3rd season of Big Brother back in 2003 (and again in 2022). The fish and chip shop owner from Tassie, soon after winning the first time around, revealed that she'd been diagnosed with retinitis pigmentosa – a rare degenerative eye disease that will eventually send her completely blind. Then, shortly after winning the second time around, she was diagnosed with Usher Syndrome, which will also most likely make her completely deaf.In this chat, she discusses her early life dealing with a mother that battled severe mental illness, life in the spotlight, realty tv and how she needs to find a job!REGGIE'S LINKS:https://www.instagram.com/reggiebirdbbhttps://www.facebook.com/ReggieBirdBB/https://www.tiktok.com/@reggiebigbrotherBROWN PARK LINKS:InstagramFacebookTik TokWebsiteShop Brown Park

Join us on an incredible journey with Bill Barkeley, a deaf-blind adventurer who defies all odds. From summiting Mount Kilimanjaro to completing the Boston Marathon, Bill lives life to the fullest. Diagnosed with Usher Syndrome, he shares his experiences of accepting his condition and finding purpose through his adventures. As the co-founder of No Barriers, Bill helps others overcome obstacles and discover their true potential. Learn about the power of acceptance, the importance of a supportive rope team, and the profound impact of embracing challenges. Get inspired as Bill shows us that limitations don't define us – we define ourselves. Don't miss this extraordinary episode with Bill Barkeley.

Episode title and number: Living with Usher Syndrome and Redefining Audiology featuring Dr. Jasmine Simmons Season 3 - #8Brief summary of the show: This conversation touches on various aspects of living with hearing and sight challenges, along with the importance of self-advocacy and the role of audiologists in providing support and understanding to patients. Dr. Simmons also shares her personal experience and how it has influenced her work in the field of audiology. Supporting Our Advocacy Work:⦁Shop our online storeBullet points of key topics & timestamps:00:00 | Welcome00:41 | Understanding Usher Syndrome and Our Guest's Journey03:04 | Personal & Professional Journey of an Audiologist Living with Usher Syndrome05:38 | Daily Challenges of an Audiologist with Usher Syndrome07:22 | Adaptive Skills and Assistive Technologies10:34 | Communication Style & Strategies13:37 | How to Maintain Healthy and Well Functioning Hearing16:10 | Assisted Hearing Devices for Those with Moderate Hearing Loss18:17| The Beauty of Being an Audiologist with Hearing and Sight Loss20:56 | Beyond Hearing Aids21:46 | How Often Should Our Hearing be Tested23:32 | A Triumphant CelebrationConnecting With Dr. Jasmine Simmons:Instagram @drjasminesimmonsFacebook @drjasminesimmonsWebsite (Soon to be unveiled) drjasminesimmons.comConnect with Bold Blind Beauty to learn more about our advocacy: Join our Facebook community @BoldBlindBeauty Subscribe to our YouTube channel @BoldBlindBeauty Check out our website www.boldblindbeauty.com Music Credit: “New Inspiration” by BasspartoutX https://audiojungle.net/item/new-inspiration/7204018Thanks for listening!❤️

This episode has two parts. The first part discusses how Odylia Therapeutics is addressing rare disease, using a novel non-profit model. The second half address two rare genetic eye diseases and the approaches being designed to address them. Dr. Ashley Winslow, CEO/CSO of Odylia, describes how a non-profit is well suited to address these rare diseases, using strategies that leverage capacities in rare disease patient communities coupled to their expertise in drug discovery.  

Melissa Chaikof is a cofounder and Chair of Usher 1F Collaborative, a nonprofit foundation whose mission is to find a treatment to save or restore the vision of those with Usher syndrome type 1F. Usher syndrome is the leading cause of inherited deaf-blindness. With two daughters affected by Usher 1F, the cause is a very personal one to her, and she is determined to save her daughters' vision. Prior to founding Usher 1F Collaborative, she worked for 14 years as Donor Research Analyst for Nonprofit Leadership (NPL), LLC. Prior to her work at NPL, Melissa was a contributing author on the topic of “English Language Acquisition of Children with Cochlear Implants” for the book written by Tom Bertling entitled Communicating with Deaf Children. She also worked as Outreach Coordinator for the Auditory-Verbal Center of Atlanta and as a systems analyst at the MITRE Corporation. She is currently a state champion for the American Cochlear Implant Alliance, past board member of the Gift of Hearing Foundation, Cochlear Implant Association, Inc. (CIAI), the Auditory-Verbal Center of Atlanta, and served as contributor and associate editor for Contact, the publication of CIAI, for six years. Melissa holds an M.S. in Engineering from Johns Hopkins University and a B.A. from the University of Pennsylvania in applied math. She lives in Boston and has three adult children, two with Usher Syndrome type 1F. To learn more about Usher 1F Collaborative and their work and progress toward a cure or to help, please visit https://www.usher1f.org.  You can listen to this episode wherever you stream podcasts and at: www.3cdigitalmedianetwork.com/the-listening-brain-podcast    

This week we are interviewing the client from the most recent episode of The Dead Files “Sudden Fury” (Season 15- Episode 2) which aired June 8, 2023. Her name is Annie and she's a hoot and a half. We talked about behind-the-scenes stuff, the ghosty stuff that wasn't even covered in the show, as well as a couple of crazy stories about things Amy Allan uncovered. We also learned about the importance of glowsticks. Content Warning:In the interview portion Annie talks about child death (about 30 minutes in), and heart attacks in our interview so trigger warning for those who need it. Also, we swear.The Activity Continues is a podcast where soul sisters, Amy and Megan chat about the TV show, The Dead Files. Our other soul sister Amy (AP) keeps us in check with facts, figures, and other fun things. Each week we dissect an episode but we also talk about pets, true crime, ghost stories, haunts, dreams, and other creepy paranormal shit.So, grab your beverage of choice, hop in the Cadillac, don't worry, Steve's driving, and join us when… The Activity Continues.This episode was recorded on June 11, 2023 and released on June 15, 2023.Episode links:Usher Syndrome: https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/usher-syndromeSuccubus: https://en.wikipedia.org/wiki/SuccubusElemental: https://en.wikipedia.org/wiki/ElementalAnnie's Videos:Crossing the line Paranormal team helping out: https://www.facebook.com/100057298486651/posts/740236767896266/?vh=eOrbs on home camera:https://m.facebook.com/story.php?story_fbid=10219399389076588&id=1267782382If you'd prefer to watch the video versions of our episodes, please seeYouTube: https://bit.ly/TACpodYT (no ads, yet)Spotify: https://spoti.fi/3iLoAqG (might have ads-we have no control over that, nor do we make any money from them)If you're looking for all our links and other info go here: https://bit.ly/TACaboutAffiliateThree Spirit Drinks. They create plant-based non-alcoholic elixirs. https://us.threespiritdrinks.com/theactivitycontinues and use the promo code THEACTIVITYCONTINUES for 15% off your entire order.CreditsHosted by: Amy Lotsberg and Megan SimmonsFact-Checker: Amy PiersakProduction, Artwork, and Editing: Amy Lotsberg at Collected Sounds Media, LLC.Theme song. “Ghost Story” and segment music by Cannelle https://melissaoliveri.com/  Join our Ghosty Fam over on Patron: https://www.patreon.com/theactivitycontinues Thank you for listening, take care of yourselves. We'll see you next week!A Paranormal PodcastSupport this podcast at — https://redcircle.com/collected-sounds2/donations

Join Catarina Rivera, DEI consultant and founder of Blindish Latina, as she shares her personal journey navigating the world with Usher Syndrome, a progressive condition impacting her hearing and vision. As a TEDx speaker and advocate, Catarina sheds light on the challenges faced by individuals with disabilities and offers insights on breaking down disability stigmas. Discover her expertise in improving accessibility, fostering inclusion, and empowering companies to design better products and retain employees. Gain valuable knowledge on overcoming internalized ableism, embracing one's unique journey, and collectively creating a more accessible and inclusive world for all.Diversity Beyond the Checkbox is brought to you by The Diversity Movement, hosted by Head of Content Jackie Ferguson and is a production of Earfluence.

Join Catarina Rivera, DEI consultant and founder of Blindish Latina, as she shares her personal journey navigating the world with Usher Syndrome, a progressive condition impacting her hearing and vision. As a TEDx speaker and advocate, Catarina sheds light on the challenges faced by individuals with disabilities and offers insights on breaking down disability stigmas. Discover her expertise in improving accessibility, fostering inclusion, and empowering companies to design better products and retain employees. Gain valuable knowledge on overcoming internalized ableism, embracing one's unique journey, and collectively creating a more accessible and inclusive world for all.Diversity Beyond the Checkbox is brought to you by The Diversity Movement, hosted by Head of Content Jackie Ferguson and is a production of Earfluence. Like this show? Leave us a rating and review!

Tyler Godsey, who is deaf, in 2017 founded 5 Points Music Sanctuary, a 501.c3 non-profit, in an old former church at the corner of Maple and Jefferson, under the mantra of sound and vibrations being ‘the core of all I've found that's good in people.' …in October, he launched the "Chasing the Light" initiative, to bring awareness and support to Usher Syndrome, an untreatable genetic disorder that includes deafness and leads to blindness. Both of Godsey's children have been diagnosed with Usher 1B. The goal of the Chasing the Light program is to give two families the opportunity to see the Northern Lights in early 2020. Tyler Godsey's building of a professional life around the untreatable medical diagnosis of his two children is both heroic and heartwarming, and sets an example for all parents.

Join us as we wrap up 2022 by sharing insightful and uplifting highlights with each of our guests as identified by YOU, our Crazy Amazing Humans community, along with a special "follow-up treat (or trick?)" from our Halloween Spooktacular in Santa Monica, CA. We feature and discuss highlights from each of our guests; Sister Rose Pacatte (The Media Nun), Christine Mirasy-Glasco (Director of Upward Bound House), Sheryl WuDunn (Pulitzer Prize-winning author), Rebecca Alexander (Disability Rights Advocate), Shirin Yadegar (Founder and CEO of Los Angeles Mom Magazine), Jamie Montgomery (Visionary Entrepreneur–Founder of The Montgomery Summit and March Capital), Maxwell Eaton (World Central Kitchen) and Sonali Perera Bridges (Co-Founder of Shero's Rise). Remember to follow us at Instagram and subscribe to our YouTube version of the podcast YouTube so that you'll have all the updates on this episode as well as keep up with all things with our Crazy Amazing Humans community! As we enter into 2023, let's remember the secret ingredient to life — that doing good does you good! We are committed to being of service to you, and we always want to remind you that YOU are CRAZY AMAZING! Thank you for being a part of this movement to make the world a better place one act of kindness at a time. Thanks for being part of the Crazy Amazing Humans community. We appreciate you!

Anna Chambers joined me to share her harrowing experience of the death of her husband, Jeff, an air force pilot, whose plane went down during a training mission in 2010; and the challenges of having to raise their two daughters who were both born with Usher Syndrome, a rare genetic disease that causes deafness at birth and may lead to blindness later in life.   Learn more at https://savesightnow.org  Connect on Facebook at Sisters for Sight Read Anna's story in Cleveland Magazine's October 2022 issue

Mandy and Kate chat to Emily Shepard, co-founder of Usher Kids Australia, mum of peashoot Louis, choir member and cricketer! Emily was inspired to start Usher Kids Australia following her son Louis's diagnosis with the rare Usher Syndrome, a genetic condition that causes hearing and progressive vision loss, and finding no existing support network at all anywhere in the country. After sharing her story in a local newspaper, Emily met Hollie, a fellow Usher parent, and the two went to the International Symposium on Usher Syndrome in Boston. Determined to make sure that no other parent would feel so alone on receiving the diagnosis, Emily and Holly founded Usher Kids Australia with the aim of providing support, connection and syndrome-specific information. Usher Kids Australia has now grown to provide a range of support and advocacy services such as after-diagnosis support, community connections, online training, conferences, advocacy and links to other relevant national and international support bodies. Emily also shares her story about Louis' diagnosis, choosing schools and the challenges of managing his condition now he's in his teens. Emily also loves taking time for herself by participating in PopChoir and playing cricket! She even started an All Abilities program at her local club for kids and teens with disabilities. Thanks for sharing your story with us Emily! · Visit the Usher Kids Australia website· Watch Emily and Hollie's story on SBS's The Feed· Watch this Focus On Abilities Film Festival story about Louis· Check out the All Abilities Cricket program at the Bentleigh Cricket Club· Find out more about PopChoir· Buy our book The Invisible Life Of Us · Get a signed copy and deck yourself out in some excellent Too Peas merch here!· Listen to our Spotify playlist – Too Peas: Songs Our Guest Peas Love· Melbourne forecast for Thursday November 16 – Shower or two, 17 degrees· Join our Facebook Hangout· Find us on YouTubeThank you for supporting Too Peas In A Podcast! Don't forget to rate and review Contact us here:Website: www.toopeasinapodcast.com.auEmail: toopeaspodcast@gmail.com Hosted on Acast. See acast.com/privacy for more information.

Rebecca is an author (Not Fade Away: A Memoir of Senses Lost and Found), psychotherapist, public speaker (including a TedTalk), group fitness instructor, extreme athlete and disability right advocate... yes, all of that!She also has a genetic disorder called Usher Syndrome type 3, which causes her to go deaf and blind. Rebecca first started losing her sight at age 12, then her hearing a few years later. She now reads brail, is fluent in sign language and protactile sign language.Rebecca talks to us about her journey discovering Usher Syndrome, how she coped with changes in her body as a teen but also how she is doing lots of fun things to enjoy life now (and as she says, "to feel alive") while she still has her sight and hearing (including hiking Mount Kilimanjaro).Rebecca shares with us why it is important for her to raise awareness for her community and how important it is to find your community. Plus we talk about inspiration porn and how disabled people are just people doing normal things.We loved this conversation and hope you do too.If you enjoy listening to our podcast and would like to support us, check out our Buy Me a Coffee page:https://www.buymeacoffee.com/jippodcastOur website:https://justinterestingpeople.comFollow Rebecca on Instagram & LinkedIn:https://www.instagram.com/reb_alexanderFollow us on Instagram:https://www.instagram.com/justinterestingpeoplehttps://www.instagram.com/rosieandre_comhttps://www.instagram.com/jeremieandre_fr

Catarina Rivera is on a mission to let people know it's not just OK to talk about disability—it's imperative to take action. Here she sits down with Women on the Move host Sam Saperstein to discuss her journey as a person with a disability, a successful entrepreneur, a public speaker, and a DEI consultant. Spreading awareness and smashing disability stigmas Catarina tells Sam that she's Cuban and Puerto Rican, and grew up in Maryland speaking Spanish as her first language. She started wearing hearing aids as a toddler and was diagnosed with progressive vision disability called Usher Syndrome at age 17. Using a white cane to help her navigate the world, she graduated from college and started her career with Teach for America as an elementary school teacher, teaching bilingual education. Later she moved into nutrition and public health, earning an MPH degree and transitioning into roles in nonprofit organizations throughout New York City, focusing on food justice work, community engagement, and capacity building. In 2020, Catarina started her Instagram account @blindishlatina to share her story as a proud disabled Latina woman. “I started Blindish Latina because I wanted to see someone like me out there in the world,” she recalls. “I wanted to put myself out there as a professional, disabled Latina woman. I wanted to represent my story and create awareness among non-disabled people. It is said that knowing just one person of an identity group reduces prejudice and bias. So I wanted to be that disabled friend for people who don't have anyone in their life that's disabled.” Catarina says her goal with Blindish Latina is to raise awareness and help everybody become a disability ally who knows how to take action on behalf of disability issues. “I want people to look at the world and realize that if they're nondisabled, their world is not my world,” she explains. “It's not the same world for disabled people and it's not okay to just leave it how it is. It needs to be accessible, whatever your capacity is. Whatever your scope of influence is, you can make a difference, whether that's at your place of worship or at work or in your family? How can you create more accessibility and inclusion for everybody?” Inclusion in the workplace As a DEI consultant, the workplace is one of Catarina's prime focus. She's invested in helping people understand that people with disabilities are invaluable additions to the workforce. For one, they have extensive life experience as problem solvers and innovators. “It takes a lot of energy to be disabled in a world that's not designed for us, not adapted to us,” she says. Catarina has several simple suggestions for how to make the workplace more accessible. She tells Sam that her first goal is to make sure that a company is focusing on disability as part of diversity, equity, and inclusion work. Disability, she says, is absolutely a part of DEI, but it's not always seen that way, and it's not always prioritized. She notes that while there are more than a billion disabled people worldwide, 79 percent of disabled employees do not disclose their disabilities to HR. “There's a lot of people that are in the workforce and you don't know that they're disabled as well as another group of people who might not know themselves that they're disabled,” she ways. “All of this to say that in the workplace, disability needs to be talked about, there needs to be real inclusion built from the leadership standpoint.” Often, she says, companies focus on accommodations—but that's not enough. “That's actually the bare minimum,” she tells Sam. Catarina emphasizes that to her, disability inclusion is strong when an organization has thoughtfully built inclusion and accessibility into every stage of the employee and customer experience. “The work has been done and employees don't have to ask for everything that they need,” she notes. “This means building in a lot of flexibility and choice and designing with accessibility in mind from the beginning.” As an example, she says, organizations can offer different ways during the hiring process for candidates to demonstrate their abilities—not just verbal interviews, but also a live activity or actionable task. She says she's both hopeful for the future and has high expectations: “I would expect to see openly disabled executive leaders. I would expect there to be representation. I would also expect to see that accessibility is a mandatory part of all design processes, whether that's the design of an employee team-building experience or the design of a new product.”   Disclaimer: The speakers' opinions belong to them and may differ from opinions of JPMorgan Chase & Co and its affiliates. Views presented on this podcast are those of the speakers; they are as of October 13th , 2022 and they may not materialize.”   Full transcript here 

Episode 073 | Steven McCoy (Journalist) joins the podcast! In this episode, Steven and I cover his life with Usher Syndrome, his career as the first deaf-blind black journalist, his stories of overcoming bullying, learning to advocate for yourself, challenging the stigmas of being disabled, the power that comes with accepting your disability, and more! --------------- Do you have a question you want to be featured + answered in an upcoming SEE-THROUGH episode? Email me at: theseethroughpodcast@gmail.com or DM me a video of your question. Want bonus episodes + exclusive SEE-THROUGH content? Join the SEE-THROUGH FEW over on Patreon. Visit: https://patreon.com/seethroughpod -- S E E - T H R O U G H // L I N K S -- Website: https://www.seethroughpod.com/ Subscribe: 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 --------------- Follow Steven on Instagram: https://www.instagram.com/stevenmccoy/ Listen to Steven's podcast 'Sessions with Steven': https://podcasts.apple.com/us/podcast/sessions-with-steven/id1223801171

This content was recorded during a Retina UK webinar on Tuesday 12 July 2022. You can watch the full version, which includes slides, on our YouTube channel: https://www.youtube.com/c/RetinaUK. Retina UK are collaborating with Usher Kids UK and CureUsher to deliver a two part webinar mini series about Usher syndrome. Our next webinar will be on Tuesday 12 July where we will be joined by Professor Mariya Moosajee looking at the latest research, clinical trials and treatment prospects for people affected by Usher's syndrome.

Speakers: Astra Dinculescu, PhD and Jacque Duncan, MD

Rachel Chaikof was one week old when her mother, Melissa, suspected that something was wrong: she didn't startle at the sound of a slamming car door. Rachel was diagnosed with Usher Syndrome, a genetic condition which causes either inherent or progressive deafness.  But being deaf was not an absolute: as a child, Rachel became one of the first children to receive a Cochlear Implant by way of an FDA trial. Because of medical innovation, Rachel could now experience the world for how it was meant to be experienced.  But later, Rachel also began to lose her sight. At the age of 19, Rachel was diagnosed with Usher Type 1, more specifically categorized by progressive blindness in addition to loss of hearing. This time, there was no medical innovation currently available, and Melissa, an experienced advocate in the network of nonprofits dedicated to hearing loss, devoted herself to a new goal: finding a cure for Usher's Type 1.  The Chaikof's have seen all that medical innovation is capable of. That's why Melissa and her husband started the Usher 1F Collaborative, a nonprofit devoted to funding such research. And while their daughter remains optimistic about all that she is capable of, her loss of sight has compromised what she loves most about the world: seeing its beauty in color and having the freedom to navigate on her own.  While Rachel is thankful for all of the modern innovations that have allowed people with disabilities to navigate society, she also believes that sometimes, that can distract from the commitment to finding a cure for genetic conditions like Usher Syndrome. Instead of pushing for our environments to adapt to us, how can we push for new research that will instead allow us to access the world for all that it is–beautiful, colorful, and full of possibilities?  Melissa Chaikof is the Board Chair for Usher 1F Collaborative, Inc. Interested in contributing? Find them here: https://www.usher1f.org/

This content was recorded during a Retina UK webinar on Tuesday 24 May 2022. You can watch the full version, which includes slides, on our YouTube channel: https://www.youtube.com/c/RetinaUK. Retina UK are collaborating with Usher Kids UK and CureUsher to deliver a two part webinar mini series about Usher syndrome. The first instalment will see us joined by a panel of sector experts, including Mr Rob Henderson (Moorfields Eye and Great Ormond Street Hospitals), Chloe Joyner (UsherKids UK), Kate Arkell (Retina UK) and Joanne Milne (CureUsher). We will be covering key questions and topic areas including what Usher syndrome is, how to get a diagnosis, both clinical and genetic, and what will happen after this, the importance of regular testing, how to interpret the genetic data and who can help you understand this and how you can connect with other support services. The second instalment of the webinar series will be held on Wednesday 22 June at 7.00pm – more details to follow.

Rebecca Alexander  inspires, empowers and entertains us with hilarious anecdotes; candid insights and expert advice that will help you overcome any obstacle and encourage you to live life to its fullest in this lively conversation with Katrina Carlson and Jefferson Denim. Rebecca is the perfect guest with whom we celebrate “National Month of Hope” because she brings that and much more in this podcast! This episode is also completely closed captioned on Crazy Amazing Humans' Youtube channel. Born with a rare genetic disorder called Usher Syndrome rendering her almost completely deaf and blind, Rebecca has written the best-selling book Not Fade Away: A Memoir of Senses Lost and Found which is currently in development to be made into a major motion picture and received an Indie Book Award. She was also honored as one of the MS Society's Books For A Better Life. She recently narrated the PBS American Master's biopic documentary “Becoming Helen Keller” and her TEDx talk entitled “H.E.L.P. - Humanity's Essence, Living Proof,” has been critically acclaimed. Rebecca has been featured on many TV shows such as The Today Show, NBC Nightly News, and ESPN, as well as numerous publications including People, Cosmopolitan and Shape. Rebecca has been honored with prestigious awards for her advocacy work, presented for TEDx, and has been the keynote speaker for many esteemed companies and organizations. She has been honored with prestigious awards for her advocacy such as The American Foundation for the Blind Helen Keller Achievement Award, Disability Rights Advocate Eagle Award, Future Vision Foundation Luminary Award, The Foundation Fighting Blindness Hope and Spirit Award, Strike Out USH, No Limits for Deaf Children Spirit of Leadership Award, University of Michigan Bicentennial Alumni Award, JWI Woman To Watch, Center for Hearing and Communication - Irving Berelson President's Award. Among her many extraordinary feats, Rebecca participated in the 600-mile AIDS Lifecycle ride, summited Mt. Kilimanjaro, swam from Alcatraz to shore in the San Francisco Bay, and competed in the Civilian Military Combine (CMC) races. Rebecca has a thriving psychotherapy practice with two masters' degrees from Columbia University in Clinical Social Work and Public Health. She works with individuals, couples, and groups, specializing in the treatment of anxiety, depression, grief/loss, eating disorders, and disability. Rebecca received post-graduate training at the Institute for Contemporary Psychotherapy at the Center for the Study of Anorexia and Bulimia and received her psychodynamic psychotherapy training from the American Institute for Psychoanalysis. Rebecca is certified in EMDR (Eye Movement Desensitization Reprocessing) and also communicates in American Sign Language and Tactile Sign Language. Rebecca currently serves on the boards of Usher Syndrome Society, Usher Syndrome Coalition, No Limits for Deaf Children, Disability Rights Advocates, Kresge Hearing Research Institute at the University of Michigan Department of Otolaryngology. As we celebrate the National Month Of Hope, always remember that we can be the source of hope for others. Every small kindness has the potential to create a Crazy Amazing Human experience, one person at a time. You have the power to create that every day because you are Crazy Amazing! And we, at Crazy Amazing Humans, are in your corner, we're rooting for you, and really appreciate you as part of our community.

17. Ian Treherne shares his photographic memory: the infamous image of James Dean walking across a rainy Times Square, NYC. The photograph was created by Dennis Stock for LIFE Magazine in 1955 and Ian has felt an attachment to the image, the story behind it and the subject since he was a child. Ian Treherne is a portrait photographer based in the UK and has a genetic condition called RP Type 2 Usher Syndrome, meaning he is legally blind and deaf. Due to this, he has faced incredible hardship and yet has an attitude of optimism and strength.Ian explores these challenges, which led him to depression and suicidal ideation, how he manages to overcome them and discusses a turning point in his life, when he was asked to give a keynote speech at a TED X conference. He has worked with the likes of Rankin, Channel 4 and the Paralympic Games, spreading a message of inclusivity and speaking our for the rights of the disadvantaged. In conversation with Vogue, Mr Porter & New York Times photographer Jonathan Daniel Pryce aka GarçonJon. Find more info on the guests and photographs mentioned in this episode below:Web:https://photographicmemory.show/Instagram:https://www.instagram.com/garconjon/

Dave Steele is an award-winning poet, author, public speaker, singer, and advocate for the blind. Diagnosed with Retinitis Pigmentosa (RP) in 2014, this genetic eye condition left Dave “severely sight impaired.” Together with his wife, Amy, the family grappled with the difficult diagnosis as RP quickly left Steele an unemployed father of four. Feeling the stressors of financial debt and the loss of his independence, Dave turned to social media for support with his RP journey. He was also struck by the numerous misconceptions and stories of injustice being experienced by so many blind/visually impaired people all over the world. When a member in one of these online groups learned of Dave's singing background, they invited him to perform at a meeting for those living with RP and Usher Syndrome. The experience inspired Steel's idea for his “Stand By Me RP” song. Using the classic song by Ben E. King, Dave altered the lyrics to relate to how he felt losing his own sight to Retinitis Pigmentosa. In December 2014, Dave sought permission from the band Elbow, to alter the lyrics of their song “One Day Like This.” With the band's blessing, Steele performed his version of the song at Joanne Milne's “Breaking the Silence” book launch. CONNECT WITH DAVE STEELE Website - The Blind Poet Instagram - _theblind_poet Facebook Page - The Blind Poet Dave Steele Twitter SHE IS A VIP WEBSITE INSTAGRAM FACEBOOK GROUP MEMBERSHIP WAITLIST SIX STEPS TO FINDING CLARITY AFTER A DIAGNOSIS OF SIGHT LOSS - FREE AUDIO COACHING GUIDE

Bill is a working psychotherapist and an honest, engaging, and entertaining human

The Tokyo Paralympics was a proud moment for all Australians with our Aussie superstars totalling an incredible 80 medals at the games. On this week's episode we take you behind the scenes of the Paralympics and share the incredible story of Para-triathlete and Paralympian Jonathan Goerlach. In Part One of the series, Jono talks about his childhood growing up in Nowra, his love for sport as well as growing up with a disability known as Usher Syndrome. Jono shares his experience with hearing difficulties as a child before being diagnosed with vision loss at aged 15 called retinitis pigmentosa. Overtime it meant that Jono experienced moderate hearing loss, no peripheral vision, night-blindness, and tunnel vision. Did that stop Jono from achieving his goals? Not a chance!A journey that took years of hard work, dedication, sacrifice and resilience to overcome some unbelievable setbacks, “Jono” questioned if he could ever achieve his dream. But join me as Jono shares his story as he found his way back to sport and started his journey to become a Paralympian. If you're looking for motivation in lockdown, this is the episode for you.~ Dan 

We are kicking off a new series of interviews with inspiring individuals from across the globe. Our aim with these series is to chat with inspirational guests who can encourage us all to look at the industries we work in (media, comms and tech) from different perspectives.    Our first guest is Molly Watt, a passionate usability and accessibility consultant and motivational speaker, with a powerful personal story. Molly, who has Usher Syndrome, was born deaf and began to lose her sight at age 12. She credits technology with being the thing that transformed her experience of the world and enabled her to live a full and rich life. Molly specializes in assistive technology and design for those with sensory impairment and is the founder of the Molly Watt Trust, which raises awareness of Usher Syndrome. She is also an ambassador for Sense, the charity for people with complex disabilities, including deafblind people. Molly is considered one of the 100 most influential disabled people in the UK.    You should listen to Molly if you want to learn about accessibility in tech - what is it, why it matters and what you need to know about it. During the interview hosted by Tyto's Senior Partner, Zoë Clark, she explains why accessibility must never be considered an add-on and highlights the importance of having an open mind, never assuming and of asking the right questions.    You can watch the recording on our YouTube channel here: https://youtu.be/wP7ZbJ31AbA

  In episode 248, I sit down with my new friend Rebecca Alexander who is a psychotherapist out of NYC living with Usher Syndrome.  Rebecca shines a bright light on her experience of going deaf-blind, how she is perceived as a disabled practitioner, the grief and loss of disability for her, why deaf-blind sex is better than hearing sex and so much more.  Enjoy!    You can follow Rebecca on her website: rebalexander.com     You can buy new Disability After Dark merch here!   Apply now to be on Disability After Dark by e-mailing disabilityafterdark@gmail.com or going to  this link:   https://calendly.com/disabilityafterdarkpod/disabilityafterdark    You can get 50% off almost any item in store at www.adameve.com and 10 FREE GIFTS by using DARKPOD at check out!   You can get 15% off your order at ComeAsYouAre.com by using coupon code AFTERDARK You can get 20% off everything at www.cloneawilly.com including your own DIY molding kit by using promo code DARKPOD at checkout!  Also, support Disability After Dark by pledging to the patreon. www.patreon.com/disabilityafterdark

On episode 84 of RadioActive Dads Brett and Nathan have their guest Jared Root to talk about the #USHER1FCEREALCHALLENGE benefiting children with Usher Syndrome.

What would you do if you knew your life was going to change irrevocably, and there was nothing you could do to stop it? That’s the predicament Mitch Scott found himself in when he was diagnosed with Usher Syndrome –a rare genetic disorder primarily characterized by deafness and a progressive loss of vision. In this episode, Mitch speaks about his diagnosis, and the decision to leave the life he had planned behind to head north and work on outback cattle stations. *** This episode is sponsored by Red Range Stock Supplements - a locally owned family run business based in Kununurra, Western Australia and servicing the whole North West. They offer a range of custom blended supplements for cattle and horses tailored specifically to your individual requirements. For more information or to discuss your supplement needs please visit redrangestocksupplements.com.au  

Rebecca Alexander is an Author, Keynote Speaker, Psychotherapist, and Disability Rights Advocate. Rebecca was diagnosed with a rare condition that would leave her blind and deaf over the course of her lifetime. When she had to use a cane to walk for the very first time, she cried. Today, she shares her experiences and how her genetic disorder has not stopped her from being an extreme athlete, jumping out of planes, and so much more.    Key Takeaways Rebecca was diagnosed with Usher Syndrome, Type 3, which is a very rare condition that only about 100 people in the world have. When was the first time Rebecca was labelled as having a disability? When Rebecca was in college, she met someone who advocated for her and made her feel like it was okay to have a disability. RJ met a 12-year-old boy who was losing his vision and he shared with him why his blindness was a blessing. When we think ‘disabled’ we immediately think of what someone can’t do. How did Rebecca become an extreme athlete? Rebecca was in a serious accident where she fell out of a window when she was younger and broke nearly every bone in her body. Humor plays a critical role in feeling alive again. Rebecca has to be physical. Ever since the accident, she lives with chronic pain. By working out, she feels like she’s in control of her body. What does Rebecca’s diet look like? What kind of challenges has Rebecca faced while being so active? Asking for help is not a weakness. People who need a cane, it can take them between 5-15 years to accept that reality and finally use one. The first time Rebecca used a cane, she cried. If you care so much about the way you look or your disability, or how it’s perceived to others, you’ll be wasting so much energy. This is who you are, embrace it. How did Rebecca become a psychotherapist? Rebecca shares her experiences skydiving! How can able-bodied people better show up for someone with a disability?   Continue On Your Journey Rebalexander.com Rebecca on Instagram Rebecca on Facebook Rebecca on Twitter   JRmartinez.com J.R. on Instagram J.R. on Facebook J.R. on Twitter J.R. Youtube Channel   Did you enjoy today’s episode? If so, please head over to iTunes and leave a review. Help others discover the REBIRTH podcast so they, too, can be inspired and motivated by the stories shared in these episodes.

Welcome to this episode everyone and thank you for tuning in! The topic of today's episode is disability and accessibility. I wanted to have a conversation on this topic early on on my podcast, for two reasons. First of all, it is a very personal subject to me, which you will hear more about as you continue to listen; and, secondly, having been in the business world, I know that this is one of those taboo subjects that has a lot of stigma associated with it, and many leaders including HR leaders still find this a very uncomfortable topic to cover. I have witnesses all sorts of awkward conversations, moments of silence, ignorance and also some truly inspirational moments. However they are too far and few. On today's episode I am having a bold and open conversation with Molly Watt who has experienced every barrier that comes with the Usher syndrome that she was diagnosed with as a child that left her both deaf and blind. Molly is a usability and accessibility consultant in Sigma's experience design team. A keynote speaker, Molly divides her time between inspiring people to consider inclusion in their everyday jobs and working as a consultant, for her own company, for Sigma and for the Molly Watt Trust, her charity. Molly has a condition called Usher Syndrome, which causes deafblindness and has no cure.Molly is a motivational speaker, author and illustrator of 2 children's books and avid blogger. She is an advocate and ambassador of both GN Resound and Sense, a national deafblind charity in the UK. Using her negative experiences to make a positive difference to others, Molly is proud to have spoken at the Houses of Parliament, Harvard Medical School, Apple Campus, Camp Digital, the BBC, the NHS and for private audiologists around the UK. Her passion is accessibility and the use of assistive technology to enable and enhance the lives of people living with life-changing conditions.Please share this conversation and let me know your thoughts and feelings by rating this podcast or using #changeagentpodcast on Twitter. Thank you for listening!You can follow and reach out to Molly via:Twitter: @MollyWattTalks and @mollywatttrustWebsite: www.mollywatt.comCharity website: www.molly-watt-trust.orgGet in touch with me via:Twitter: @BaibaZiga and @Consulting_LHCLinkedIn: Baiba ZigaE-mail: info@lakehouse-consulting.comWebsite: www.lakehouse-consulting.com

Welcome to Lockdown II: Electric Boogaloo or whatever we’re calling these latest Unprecedented Times. It’s already having an effect and has put My Red Stripes – disability and inclusion campaigner Jo Milne’s public health awareness campaign around Usher Syndrome – on hold for a while. Nevertheless, Jo still has a lot of interesting stuff to share with Mick about what she’s been up to, what we can do to recognise invisible disabilities, and how masks are a problem for deaf people. Meanwhile, Hannah’s chatting to director Eva Mulvad about Love Child, her poignant documentary of Leila – who also joins in the chat – and Sahand, an Iranian couple who, outlawed for their love, flee the country with their four-year-old son, Mani.And in Rated or Dated, it’s happy 80th birthday to Alfred Hitchcock’s take on Daphne Du Maurier classic, Rebecca. Does it lead to violent love behind a palm tree or will Hannah and Mick set fire to it a la Mrs Danvers and Manderley? Next slide, please. Support this show http://supporter.acast.com/standardissuespodcast. See acast.com/privacy for privacy and opt-out information.

This week Elle talks about her life with Usher Syndrome which deeply impacts sight, hearing and balance for her. She goes into detail about daily life and the obstacles she faces with this very rare syndrome. Thank you for listening! Everything said in our podcasts are based on our own experiences and should not be taken as medical advice.

ABOUT MY GUEST For my next guest in the LVG PODCAST, I have Catarina Rivera. Here is a quick intro about Catarina Rivera. “Catarina Rivera, MSEd, MPH is a disability stigma smasher sharing her story as @blindishlatina on Instagram. Catarina has vision and hearing loss due to Usher Syndrome. She's an entrepreneur, public speaker, nonprofit professional, and advocate for accessibility and inclusion. In 2018, she was named to “40 Under 40 in NYC Food Policy“ list. She is the co-founder of ExplorEquity, a socially conscious travel company that highlights global equity issues through travel experiences. She enjoys dancing, fitness, travel, and is learning Italian. You can contact her on Instagram or through her website: https://www.catarinarivera.com/“ SPONSORS READING: Here are two books that I recommend to read. John Maxwell's Failing forward and T Harv Etker, Secrets of a millionaire mind. Read them for by clicking on Scribd and get 2 month free. Get your 2 months of FREE reading here: >>>>>>>>>>>. https://bit.ly/2xZ01ix BLUEHOST: Have you ever wanted to write your own blog so that you can tell your own story? Well, that is what happened when I started LOW VISION GUY. BLUEHOST is a one-stop-shop for finding the name of your website, building your website and publishing your blog/website to the world. CLICK HERE TO GET STARTED. Start your blog today: >>>>>>>>>>>>>>. http://bit.ly/33s1VUw JOIN THE LVG PODCAST FACEBOOK COMMUNITY AND TALK TO Catarina Rivera. Join the Facebook group today: >>>>>>>>>>> https://bit.ly/3bq17CK FOR SHOW NOTES AND MORE ABOUT THIS PODCAST, GO TO: THELOWVISIONGUY.COM THELOWVISIONGUY.COM THELOWVISIONGUY.COM --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/lvgpodcast/message Support this podcast: https://anchor.fm/lvgpodcast/support

When Rebecca Alexander was 12 years old, she had trouble seeing the blackboard. She made her way from an optometrist to an ophthalmologist and was eventually diagnosed with Retinitis Pigmentosa (RP). Her parents were told that she would be blind by the time she was an adult. Rebecca also had a cookie bite of hearing loss. Through high school, she wore her hearing aids as little and as discreetly as possible. It wasn’t until Rebecca was in college that she experienced extreme tinnitus and saw an otolaryngologist that the diagnosis of Usher syndrome became real. Today, Rebecca Alexander is an award-winning author, psychotherapist, keynote speaker, group fitness instructor, disability advocate, and extreme athlete. She also has Usher syndrome type III, and is almost completely blind and deaf. Her book, Not Fade Away: A Memoir of Senses Lost and Found is being made into a major motion picture. GAP licensed a mantra from her memoir, “Breathe in Peace, Breathe out Fear,” and launched a campaign on International Women’s Day in March 2020, featuring Rebecca as well as another woman with Usher syndrome. The two t-shirts that GAP created have already sold out, but you can see the campaign video here! Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show. Rebecca Alexander’s website Buy Rebecca's book: Not Fade Away: A Memoir of Senses Lost and Found Connect with Rebecca on Social Media: Rebecca on Twitter: @Reb_Alexander Rebecca on Instagram: @reb_alexander Rebecca on Facebook Resources related to Usher syndrome Usher Syndrome Coalition Usher Syndrome Society Ava’s voice (in NJ) The Foundation Fighting Blindness The Hellen Keller National Center Check out other Patient Stories podcast episodes. Do you want to support Patient Stories? You can now make a donation online! Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media. Patient Stories on Twitter: @GreyGeneticsPod Patient Stories on Instagram: @patientstoriespodcast Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone.

Bestselling author Peter May speaks to presenters Paul Waters & Stevyn Colgan over 3 parts in this edition of We’d Like A Word. It’s an experiment to see if it’s easier for you to listen to 3 separate parts around 20 mins, rather than a single hour long podcast. Please let us know if it’s easier/harder/no different/gecko. Peter May is the author of many award-winning thrillers, including the Lewis trilogy & his China series. He’s also been a journalist and written oodles of TV scripts. He’s sold millions of books and lives between southern France and Spain. We are NOT jealous! He’s been hired as a private detective by two giant geckos. No, really. Listen & learn! And he ran away with a band in his teens. In this podcast he talks about creating a sense of place in A Silent Death set in Spain & Gibraltar, weaving in humour & also about a character who has Usher Syndrome - ie is deaf/blind. (By the way, you can find out more about Usher Syndrome at the Sense charity website www.sense.org.uk ) We'd Like A Word is a podcast and radio show from Paul Waters and  Stevyn Colgan. We talk with writers, readers, celebrities, talkers,  poets about books, songs, lyrics, speeches,  scripts, fiction and  non-fiction. We go out on various radio platforms at least once a fortnight and every other Thursday on podcast. Our website is www.wedlikeaword.com -  which is where you'll find information about Paul and Steve and our  guests - and details of the radio stations that carry We'd Like A Word.  We're also on Twitter @wedlikeaword and Facebook @wedlikeaword and our email is wedlikeaword@gmail.com - and yes,  we are slightly embarrassed by the missing apostrophes. We like to hear  from you - your thoughts,  ideas, guest or book suggestions. Perhaps you'd like to come on We'd Like A Word in person, to chat, review, meet writers or read out passages from books. . .

Bestselling author Peter May speaks to presenters Paul Waters & Stevyn Colgan over 3 parts in this edition of We’d Like A Word. It’s an experiment to see if it’s easier for you to listen to 3 separate parts around 20 mins, rather than a single hour long podcast. Please let us know if it’s easier/harder/no different/gecko. Peter May is the author of many award-winning thrillers, including the Lewis trilogy & his China series. He’s also been a journalist and written oodles of TV scripts. He’s sold millions of books and lives between southern France and Spain. We are NOT jealous! He’s been hired as a private detective by two giant geckos. No, really. Listen & learn! And he ran away with a band in his teens. In this podcast he talks about creating a sense of place in A Silent Death set in Spain & Gibraltar, weaving in humour & also about a character who has Usher Syndrome - ie is deaf/blind. (By the way, you can find out more about Usher Syndrome at the Sense charity website www.sense.org.uk ) We'd Like A Word is a podcast and radio show from Paul Waters and  Stevyn Colgan. We talk with writers, readers, celebrities, talkers,  poets about books, songs, lyrics, speeches,  scripts, fiction and  non-fiction. We go out on various radio platforms at least once a fortnight and every other Thursday on podcast. Our website is www.wedlikeaword.com -  which is where you'll find information about Paul and Steve and our  guests - and details of the radio stations that carry We'd Like A Word.  We're also on Twitter @wedlikeaword and Facebook @wedlikeaword and our email is wedlikeaword@gmail.com - and yes,  we are slightly embarrassed by the missing apostrophes. We like to hear  from you - your thoughts,  ideas, guest or book suggestions. Perhaps you'd like to come on We'd Like A Word in person, to chat, review, meet writers or read out passages from books. . .

Bestselling author Peter May speaks to presenters Paul Waters & Stevyn Colgan over 3 parts in this edition of We’d Like A Word. It’s an experiment to see if it’s easier for you to listen to 3 separate parts around 20 mins, rather than a single hour long podcast. Please let us know if it’s easier/harder/no different/gecko. Peter May is the author of many award-winning thrillers, including the Lewis trilogy & his China series. He’s also been a journalist and written oodles of TV scripts. He’s sold millions of books and lives between southern France and Spain. We are NOT jealous! He’s been hired as a private detective by two giant geckos. No, really. Listen & learn! And he ran away with a band in his teens. In this podcast he talks about creating a sense of place in A Silent Death set in Spain & Gibraltar, weaving in humour & also about a character who has Usher Syndrome - ie is deaf/blind. (By the way, you can find out more about Usher Syndrome at the Sense charity website www.sense.org.uk ) We'd Like A Word is a podcast and radio show from Paul Waters and  Stevyn Colgan. We talk with writers, readers, celebrities, talkers,  poets about books, songs, lyrics, speeches,  scripts, fiction and  non-fiction. We go out on various radio platforms at least once a fortnight and every other Thursday on podcast. Our website is www.wedlikeaword.com -  which is where you'll find information about Paul and Steve and our  guests - and details of the radio stations that carry We'd Like A Word.  We're also on Twitter @wedlikeaword and Facebook @wedlikeaword and our email is wedlikeaword@gmail.com - and yes,  we are slightly embarrassed by the missing apostrophes. We like to hear  from you - your thoughts,  ideas, guest or book suggestions. Perhaps you'd like to come on We'd Like A Word in person, to chat, review, meet writers or read out passages from books. . .

Dave Steele is an award-winning poet, author, public speaker, singer, and advocate for the blind. Diagnosed with Retinitis Pigmentosa (RP) in 2014, this genetic eye condition left Dave “severely sight impaired.” Together with his wife, Amy, the family grappled with the difficult diagnosis as RP quickly left Steele an unemployed father of four. Feeling the stressors of financial debt and the loss of his independence, Dave turned to social media for support with his RP journey. He was also struck by the numerous misconceptions and stories of injustice being experienced by so many blind/visually impaired people all over the world. When a member in one of these online groups learned of Dave's singing background, they invited him to perform at a meeting for those living with RP and Usher Syndrome. The experience inspired Steel's idea for his “Stand By Me RP” song. Using the classic song by Ben E. King, Dave altered the lyrics to relate to how he felt losing his own sight to Retinitis Pigmentosa. In December 2014, Dave sought permission from the band Elbow, to alter the lyrics of their song “One Day Like This.” With the band's blessing, Steele performed his version of the song at Joanne Milne's “Breaking the Silence” book launch.The Blind PoetDave created his own “Stand By Me RP” Facebook page in 2015. Since it's conception, the page has become one of the largest social media RP groups in the world. As his eyesight continued to decline, the words did not stop flowing. Dave began writing two to three poems per day about his struggles and experiences. Part creative genius, part therapy, Dave's writing became a catalyst for helping others and himself through RP.Steele's first book, Stand By Me RP Volume I, was released in February 2016. That same day, he received the call that he had been matched with a guide dog. During its first week, Stand By Me RP Volume I went on to become the #1 poetic release in both America and Australia.

Let me introduce you to Bill Barkeley. You could say that Bill lives an adventurous lifestyle. He has summited Mount Kilimanjaro, finished the Boston Marathon two times and hiked the 500-mile Camino de Santiago just to name a few. What's inspiring is that Bill has a rare disease called Usher Syndrome. He's both deaf and blind. Bill found his calling as a deaf-blind adventurer and co-founded a nonprofit, No Barriers, which embraces an ethos of finding purpose to get around obstacles in life, especially oneself.   EPISODE SUMMARY - Bill was profoundly deaf from the age of 5. - At the age of 28, Bill was married, working at Fortune 500 company, and had just had his first baby and living in San Francisco. - Several car accidents made Bill go to the eye doctor - thinking he needed glasses. - Eventually a specialist diagnosed him with a rare disease called Usher Syndrome - type II - the leading cause of deaf-blindness. - You can imagine this felt ‘like a death sentence’ to hear that you were going blind. - Bill surrendered on his first adventure - climbing Mount Kilimanjaro in Africa - he let go and found himself - letting go of what he thought the world was expecting of him. - Bill’s adventures have deep meaning and purpose - but also fun and difficult. - Bill talks about his wife and the role of the spouse and caregiver. - Coping skills - accept yourself and surround yourself with the ‘rope team.’ - No Barriers USA - Bill’s non-profit helps folks get over the largest obstacle, 90 percent of the time it’s them.   QUOTABLES - “It just felt like a death sentence, even though I wasn't dying. It was really about the realization that life was not going to be necessarily on my terms.” - “If you go out to life it's great, but life isn't going to come to you.” -  “So the minute I let go of what I thought the world was expecting me to do that climb. Is the time, I said, you know, I'm going to do this. I can do it. I made it this far. And it's not about them. It's about me and about finding a new direction and new focus on my life.” - “Kilimanjaro... One of the insights that we've been talking about is finding yourself. But it's also about that time when you make the decision to live, you know that life is worth having and that you really can't imagine it not being there. “ - “You can call me a lot of things: A father, a son, a husband, a community member, a board member, you can call me some not so nice names. You can call me some good names. You can call me deaf. You can call me blind. They're just ways people describe me. But it doesn't have to define me. I define myself every day by what I do or where I go.”  - “Impact is powerful. We get great gifts by taking on challenges and adversity and mountains in our lives. We get the reward of knowing that we can make ourselves and other people on the human journey better, more satisfied, happier and fulfilled. So that's why I do adventures.” - “You know, it's important to just realize life doesn't come to you. We are tasked with the purpose of making the life.” - “So the coping piece of it is really comes around a number of different things. One is accepting yourself, realizing that you have your constraints and challenges. That's one piece. Another piece is surrounding yourself with what I call the rope team. I mean, people that really care about you. People that will listen to you. People that want to help in some way or capacity... have an emotional connection to you. And that you matter to them or you matter to life or things around you. That really means getting over yourself and saying, you know, I need help.”  - “To me, coping is realizing that it isn't going to come from just inside you. It's going to come from the world around you. And it's how you use the tools and resources and other people in the world around you that is going to define your ability to cope.”   TRANSCRIPT AVAILABLE https://inourbelly.com/season-1/episode-4-bill-barkeley   RESOURCES http://billbarkeley.com/   Bill is the co-founder of No Barriers USA, a non-profit dedicated to helping others overcome obstacles in their life https://nobarriersusa.org/ SHOW RESOURCES Subscribe, rate and review this podcast ♥️ Thanks for listening! http://inourbelly.com to preview all episodes coming up and future seasons Become a Patron https://www.patreon.com/bellyofthebeast @inourbelly on Instagram http://instagram.com/inourbelly @inourbelly on Twitter  http://twitter.com/inourbelly @davidall on instagram (host) http://instagram.com/davidall

We chat to Molly Watt, Accessibility and Usability Consultant at Sigma.Molly has Usher Syndrome, a genetic condition that leads to deaf blindness, which she developed at a young age. We hear from Molly about her experiences of school as someone with accessibility needs, and the challenges she experienced with inaccessible ways of teaching. We get an insight into her trip to Apple HQ in Cupertino, and why this inspired her to pursue a career in accessibility consultancy.We learn about the importance of inclusive design in web services, and why people need to stop associating accessibility with disability. Molly shares her passion for helping people, and we hear how the Molly Watt Trust charity is helping many people with usher syndrome to access the technology they need.An must listen for anyone designing and delivering inclusive public services!

  About Our Guest Jacob Lacourse is the founder of Adapt the World Labs., where a husband and wife team “see the benefit of using technology to help people with extra needs, and we aim to leverage technology to solve challenges and enhance the lives of the most vulnerable among us.” As an element of their main mission, Jake and Beth Lacourse bring awareness and fund raising to a specific rare disease known as Usher syndrome. “We are the parents of two beautiful children, one of which is two years old and has Usher Syndrome which is the leading cause of deaf-blindness. When we learned of our daughter’s disease, we immediately began thinking of ways to adapt the world to her needs to ultimately make it more accessible.” Jake found me while I was on my documentary journey. Immediately after I finished the interview with Mick Ebeling, founder of Not Impossible, I received an email from Jake, Winner of the 2018 Not Impossible Limitless award. He is the director of engineering at Onset Computer with a background in product development from concept to design and through manufacturing. However, Jake had no experience in making toys and tools for kids with special needs. On this podcast, he takes us to his beginning days of setting up Adapt the World and learning how to invent new things that never existed before.   Visit our websites for show notes and more resources related to this episode: www.feisworld.com/blog/jacob-lacourse --- Send in a voice message: https://anchor.fm/feisworld/message Support this podcast: https://anchor.fm/feisworld/support

Ask Win is a podcast where you are a VIP. Win wants to focus and teach people more and Cerebral Palsy. You’re welcome to ask questions about anything that you want. CP questions but mainly life questions on how to deal with CP or not. Win can ask you base questions if you want. Please let us know or there will be no base questions. If you have any questions for Win please email her at askingwkelly@gmail.com. In 2018 let be open and honest on Ask Win. To learn more about Ask Win visit http://askwin.weebly.com. Be sure to FOLLOW this program https://itunes.apple.com/us/podcast/wins-women-of-wisdom/id1060801905. Plan A: Please donate to Ask Win by going to Payment Venmo Win1195 at https://venmo.com/. Plan B: Have you seen Cash App? Try it using my code and we’ll each get $5. TJHHMMQ: https://cash.me/app/TJHHMMQ. Plan C: $60 to $100 for Ask Win: https://www.nolo.com/legal-encyclopedia/form-nonprofit-eight-steps-29484.html. Plan D: Please support this podcast by PayPal at https://www.paypal.me/WCharles, https://www.patreon.com/Askwin, or go to https://www.zellepay.com/how-it-works. Check out Ask Win on Shopio at http://www.shopio.com/?ref=askwin. Google Podcasting App Product Manager #212 - New Media Show: https://www.stitcher.com/podcast/geek-news-central-podcast/the-new-media-show/e/55231838?autoplay=true. Inktale: https://inktale.com. To see Wn’s art and learn more about her go to http://www.blurb.com/b/1656186-art-by-win-k-charles, https://www.redbubble.com/people/wcharles/portfolio, and http://linkedin.com/in/win-c-1a25b984. Please donate to Aspen Country Day School at https://www.aspencountryday.org/page.cfm?p=652. Get cash back for shopping on Ebates! Sign up with Win’s invite link for a $10 bonus when you shop at over 2,000 stores like eBay, Macy’s & Walmart. The link is https://go.ebat.es/imsk/2IHGc9cNtK. Join us on LinkedIn at https://www.linkedin.com/in/authorwincharles/. To follow Win’s new page CP Fashion go to https://www.facebook.com/cpfashion81611/. Academy of Art University Online Open House: https://youtu.be/5UpzLgK46CE. To learn how Win walk and about Ekso go to http://www.bridgingbionics.org/, or email Amanda Boxtel at amanda@bridgingbionics.org. Please donate to the Bridging Bionics Foundation. Please send a check in the mail so 100% goes to Bridging Bionics Foundation. In the Memo section have people write: In honor of Win Charles and Danielle Coulter. Thank you in advance, Win and Danielle. Send to: Bridging Bionics Foundation PO Box 3767 Basalt, CO 81621 Thank you Win On Ask Win today (Monday, December 10, 2018), Best-Selling Author, Win C welcomes Amy Bovaird. Amy graduated from Girard High School. In 1982, she received her bachelor's degree with a double major in English Literature and Teaching English as Foreign Language. In 1995, Amy earned her master's degree in Bicultural Bilingual Studies at the University of Texas in San Antonio. In 2004, she earned an additional certificate in Language Teaching from Cambridge University in England. Amy has worked at many unusual jobs over the course of her life, from selling hats at Cedar Point to bagging glass bottles for the medical industry. She has taught English to children and adults in seven countries around the globe and has visited thirty-three countries. She taught English to all ranks of international military personnel, ranging from privates to generals. Her field was Specialized English, with such topics as the Abrams Tank, Explosive Ordnance Disposal, Mapreading, Naval Operations. and Leadership at Lackland Air Force Base. At age 28, she was diagnosed with Retinitis Pigmentosa (RP) and declared legally blind. RP is a hereditary, degenerative eye disease that results in blindness or near blindness. There is no cure to date. Today Amy has no peripheral vision. She jokes that she is at the end of the tunnel vision in her eyesight. She suffers from a dual disability: progressive vision and hearing loss, which may be due to Usher Syndrome, the leading cause of deaf blindness in the world. Amy’s memoirs include: Mobility Matters:  Stepping Out in Faith, Cane Confessions: The Lighter Side to Mobility and a memoir / devotional, Seeking Solace: Finding Joy After Loss. In 2015, Amy joined a group of blind professionals who volunteer their time to help others cope with blindness at VisionAware.org, an outreach website of the American Foundation for the Blind. In 2016, Ohio Valley University, Amy’s undergraduate institution, awarded her the Distinguished Medal of Literature for Mobility Matters. Amy is an active member of several community groups, which include Pennwriters, West PA Authors, Toastmasters, the West County Lions Club, and the National Federation for the Blind. Though Amy no longer teaches in the classroom, she still educates by speaking to groups about the challenges of sight loss with anecdotes of faith and humor. She blogs about her experiences in hopes of bridging gaps between the sighted and the blind. She also talks about culture and travels. In the daytime, she spoils her aging cat and works on future publications. To learn more about Amy visit https://amybovaird.com/. Hi WIn, I would love to sell more books so promoting them would be a big help.  If the links would help, I can send them.  Mobility Matters: Stepping Out in Faith  https://amzn.to/2ls28BO Cane Confessions: The Lighter Side to Mobility  https://amzn.to/2HMHPwm  Seeking Solace: Finding Joy After Loss   https://amzn.to/2ls28BO They are avaIlable in Kindle, Audio, Regular and Large Print Paperback format.   I SO look forward to talking to you tomorrow!!  Amy  I love people with low vision and I try to help them as much as I can but at the same time I cannot help them because I don’t know what they need. To Amazing Amy I’d love the little vision community but at the same time I don’t know how to help them if you have any answers please let me know. Danielle, I am going to call in via the USA number tomorrow morning at 8:45 am with my cell phone.  I didn't understand that I was supposed to write a blog post? Can you tell me exactly what I need to focus on as Win has asked me to write one. Are the four base questions supposed to be the topic or is it supposed to be about something else? Can you re-send the instructions?  Thank you so much. Will be waiting. :)  Amy Bovaird Hi Danielle,  Thank you. I would have been happy to do that but I didn't see it in the initial instructions. But I won't worry about it and look forward to the interview this morning. :D  Thank you so much!  Amy  To get School of Podcasting Monthly Membership go to https://www.theschoolofpodcasting.com/bundles/school-of-podcasting-monthly-membership?ref=6e6340. To buy Win’s first bio, I, Win, go to https://amzn.to/2mnDtyA. To donate to I, Win go to https://www.paypal.me/askwin. To listen to I, Win on Audible go to https://www.amazon.com/Win-Journey-Disabled-Living-Non-Disabled/dp/B00BL7VZRI/ref=mp_s_a_1_1?ie=UTF8&qid=1533509424&sr=1-1&pi=AC_SX236_SY340_QL65&keywords=I%2CWin%3A+Hope+and+Life%3A+My+Journey+as+a+Disabled+Woman+Living+in+a+Non-Disabled+World&dpPl=1&dpID=51VEVReFh3L&ref=plSrch. To go buy Danielle Coulter’s books go to https://www.amazon.com/kindle-dbs/author?_encoding=UTF8&asin=B00OFIOY3C. To go buy Carla Wynn Hall’s books go to https://www.amazon.com/kindle-dbs/author/ref=dbs_P_W_auth?_encoding=UTF8&author=Carla%20Wynn%20Hall&searchAlias=digital-text&asin=B00HU8SDFO.

Today on the show we get to speak to the amazing Molly Watt. Molly is registered deaf blind due to a genetic condition called Usher Syndrome. She is a keynote speaker, usability and accessibility consultant, and a published author. Molly uses her passion and experiences to specialize in accessibility and usability in the world of design. Now, Molly’s story, presentation, and videos are truly inspiring and in this episode we have a fascinating and wide ranging conversation about inclusion and diversity.

Author, psychotherapist and extreme athlete Rebecca Alexander discussed her life with Usher Syndrome and her work with ophthalmologist Dr. Daniel Laby and Major League Baseball in promoting awareness of the condition.

Johnny Walsh is a Madison lawyer and stand up comedian. He recently won the annual Madison's Funniest Comic Contest at the well-regarded Comedy Club on State. Walsh, who is legally blind as a result of Usher Syndrome, discusses making his parents laugh and where he hopes to go with comedy.

Co-founder of Hear See Hope, Lane McKittrick, shares her experiences in raising her two boys who have Usher Syndrome and working with IEP teams.

Carly Fredericks is the mother of Ava. She discusses her experiences with raising an individual with Usher Syndrome. She shares how Ava continues to self advocate for herself for educational services and in life.

See full Transcription Below.     Molly Wezel-Peterson shares her journey, her story, her coping while sitting down one on one with Jeff Thompson of Blind Abilities. From her earliest days, through high school and graduating college Molly tells us what it is like accepting Usher Syndrome and staying positive about her future. I hope you enjoy this look inside of Molly’s life and what she faces every day with Usher Syndrome. I know I did and I learned a lot about DeafBlind from someone who is a true advocate for those facing the challenges which they cannot control but they can rise above the limited expectations.    Thank you for listening. You can follow us on Twitter @BlindAbilities On the web at www.BlindAbilities.com Send us an email Get the Free Blind Abilities App on the App Store.   Transcript:   Molly: You know, knowing I'm going to become blind, I would say at this point in my life, I, I do accept it. Um, it was difficult and it took a long time. Of course, I started out crying and it was very upsetting but I've since spent a lot of time learning how to cope as a deaf/blind person, and also educating my family. I do need to, to, to prepare. I do need to get ready, I mean I can still see but I want to be completely prepared when I do lose my sight, when I do become legally blind. I am taking advantage of the sight that I have now to be able to learn how to live as a person that won't have sight potentially in the future. SSB is fantastic as a support for deaf/blind and there is other organizations outside of Minnesota that are very supportive. Deaf, blind, hearing, whatever your disability is, you can do it. You will be afraid, you will want to isolate yourself, but don't go that route. Take advantage of all the wonderful opportunities that are out there to help you achieve what you want to achieve.   Jeff Thompson: Welcome to Blind Abilities. I am Jeff Thompson. I would like to introduce you to Molly Wezel-Peterson. She is someone who happens to be deaf/blind, college graduate, hard worker, an advocate, and who wants to share her story about living with Usher Syndrome. From her past to present to her future, Molly shares her thoughts, her emotions, how she copes, and most of all, she is sharing her story with you all. And if you want to find more podcasts with the blindness perspective, check us out on the web at blindabilities.com, on Twitter at blindabilities, and download the free Blind Abilities app from the app store, that is blind abilities, two words. So without further ado, please welcome Molly Wezel-Peterson. Molly: Was I born deaf, nobody really knows. I don't know if I was born hearing or born deaf, it was just never identified but, um, they found out that I was deaf probably when I was around 2, they kinda assumed I was deaf. I was adopted and there was really very, no communication so my parents put me in a special education school, and, I learned sign language with a tutor, and I went to a mainstreamed school so, itís called the Gideon Pond. It was a school for mostly hearing children but as a deaf student, as a deaf person I went there to Gideon Pond and I had a teacher that was there in the Special Ed classroom that taught me and used sign language. And so I learned sign language in school plus my parents learned sign language as well. And really both, my parents have since divorced and they weren't sure where I should go to school at that point so I, that's when I ended up going to MSAD in Faribault. I had actually first went to a, first I went to a summer program in Fairbault just to see what I thought of it and I had not yet been identified as having Usher Syndrome so deaf/blind, so just deaf and I really liked the summer school program when I was in Fairbault. It was total immersion environment where everybody was using sign language and so I ended up going to the school and noticing then that little things, like I couldn't read the black board you know far, and they were starting to notice I was having some vision issues so went to get a check up to the eye doctor and I was labeled as having Usher Syndrome when I was about 10. So we just sort of, I stayed in this regular deaf program despite you know, that, I just ended up graduating from MSAD, well before high school, I had a support group when I was in the, in Gideon Pond, and when I was diagnosed with having Usher's Syndrome, there was a support group. I also, you know, I played sports and did every, anything that I could do while I still had you know, my vision and didn't want to be blocked. I had never learned, I mean I never went to a specific blind school, MSAB. I never went there, so MSAD, Minnesota State Academy for the Deaf and then MSAB, Minnesota State Academy for the Blind, are very close to each other but I strictly went to MSAD. I was, my vision was fine at that time. I was just identified, I identified myself as deaf.   Jeff Thompson: You can find out more about the Minnesota State Academy for the Deaf on the web at msad.msa.state.mn.us.   Molly: So things progressed and I had other friends that, I met other friends that had gone to MSAD, and again, my vision hadn't declined at that point and I met folks at MSAB. But I didn't learn braille and I didn't become skilled at what I needed to know as being a blind individual until after high school. I really wanted to be independent before my vision really went don so, I went to a vocational program. Now I didn't come here to the State Services for the Blind but a different program where I really learned how to be independent and learned skills on how to be a deaf blind individual, I learned braille and just different life skills to prepare me for when my vision did decrease to the point where I would be labeled as deaf/blind and I am very skilled being independent, I really did practice and was very much encouraged to practice the skills that I was learning.   Jeff Thompson: If you are seeking the skills to enhance your opportunities, check out your state services and see what they can do for you.   Molly: And let's see, so yeah, I'm just trying to think, it was at the time just pretty basic, that I was learning, I mean I wasn't an expert but I knew enough. And I decided, ok, that is good enough, I am going to go to a different college, I am gonna get my degree, I am going to get a job, those are my goals and plans for the future so that is when I went to the National Technical Institute for the Deaf, NTID and it's under the Rochester Institute of Technology, RIT. And that is is Rochester, New York, so I entered that program and they have a few deaf programs that's specific programs there that I was involved in. I was very motivated, I socialized a lot and I was very involved in a deaf/blind support group as well. I experienced living through you know the frustrations of high school, I was now in an environment that was very supportive, I was getting more and more skilled in functioning as a deaf/blind individual and getting to know the deaf/blind community.   Jeff Thompson: Be sure to check your local area for organizations, support groups, communities where you may find support or give support and enhance not only your own opportunities, but may be able to help someone else.   Molly: So I did graduate, got my degree. My technical degree and I came back home, I wasn't satisfied, I was frustrated, I wasn't getting full time work and I was kind of not sure where things were going and I wasn't focusing on the deaf/blind community. What was important to me was finding a job. You know, getting opportunities that I could get at that time of my life, you know where I was, and I decided the job that I had, I was going to quit and I was going to become a full-time student at Metro State University. You know it was a local college and it was relatively inexpensive, and it was going to be an MA in business. Plus, at the same time I was, I was starting to get more and more involved in the deaf/blind community here. So, I was trying to balance those two things with school and deaf/blind community and again, I was slow in learning the skills I needed to learn and developing them to a proficient level since I was so focused on school and my friends and that type of thing and about four years ago I found a job at the U.S. Army Core of Engineer where I've been, plus I had graduated in 2014 with my MA degree and the company, you know I did meet my goals. I was, you know got a degree and I got a full-time job and it's been permanent work, full time and I've been very happy there.   Jeff Thompson: You can find out more about Usher Syndrome by searching Google or by going to the American Foundation for the Blind website at www.afb.org and search for Usher Syndrome.   Molly: So my vision then had, you know, it's not like all of a sudden it just went away, it slowly just started to decline especially starting at night. And during the day it was ok but I started to notice my night vision was really decreasing, I was depending more and more on people to help me get around and, you know friends, and that type of thing. So I tapped into my deaf/blind community again and really started to learn more and more coping skills and definitely improve my own skills on how to be more and more dependent, you know as a deaf/blind individual. That's kind of everything in a nutshell.   Jeff Thompson: We're talking to Molly Wezel-Peterson and I want to thank you very much for coming on board and sharing your story with the Blind Abilities listeners.   Molly: It was my pleasure, thank you.   Jeff Thompson: Molly, with some residual sight, what is your preferred method of communications?   Molly: Well, it actually depends on the individual. For myself, Technically, let's see, legally blind so, on my left, I am not legally blind yet on my right. Now I am deaf plus legally blind on my left both so, but I can still see well enough you know when there is light, when it is bright. Normally preferred is sign language, American sign language to be more specific. Now it's very important that whomever I am communication with, they were very dark solid as a background to their hands, or if they are a black person they have you know, light solid colors just as there is a contrast for their skin color, then preferred is the American sign language. But that again has to be in an environment where I can see. Now when I become fully blind, it's going to most likely be tactile sign language, I don't use that right now just because I don't need to yet. Although I do use tactile sign language sometimes when it is nighttime, if I'm in a dark environment, if the lights are very low, obviously if it is pretty dark I would need to use tactile sign language just because I can't see otherwise, but for now American sign language is preferred.   Jeff Thompson: So what kind of social networking platforms do you use?   Molly: I use an IPad, I use Snapchat, I use Glide, Facebook, IMO, I mean I use pretty much everything, what is it, I use Twitter. I do a lot of social networking, social media.   Jeff Thompson: A friend from high school put this question forward. And it's about her little sister, actually her kid sister, and she writes: My sister does a little signing but not a lot, she does not communicate well because she has been this way since birth. But I always ask myself, what could she be thinking? One of the thoughts is, does she think that she is different than us? Maybe even better because she is not caught up in all of the social values that we are. Less stressed, I guess from this question, she is just wanting answers to know what it's like to be deaf/blind.   Molly: Well, I would say being deaf and blind, taking two senses away, really there is very limited communication because when you are deaf, you can communicate, you have your hands, you can see other people signing, you can sign. When you know then become blind, that takes away that mode of communication that you have to transition and practice to learn a different mode of communication. Typically tactile sign language. Minnesota is great because it does provide a program where you can learn it. But it is a challenge to communicate with people. I mean, not a lot of people know tactile sign language so you can feel very isolated. It is very important to find a social network that you can tap into so you don't start felling negative and lonely and alone.   Jeff Thompson: Oh I bet, you know, I have vision loss. But I used to see everything and so like when I hear someone sigh I can imagine them rolling their eyes or actually they are just rolling their eyes but they make a sound and I can put it all together. But you know it's kind of different from someone from the outside looking in. Kind of like you know, her writing this letter about her sister. Because I know about blindness. I know nothing about being deaf. And actually I don't even feel half way of understanding it all.   Molly: Just to tag on to what you are saying. In the past, well I just want to say that there is something you call pro tactile. We abbreviate it as PT in deaf/blind community, that's kind of emerging as a new type of thing in the deaf/blind community and wow. Especially not so much in the blind community, specifically in deaf/blind community, pro tactile. So you know, like you were talking about with expressions, now you're deaf, you watch expression, facial expressions, that's even part of American sign language. It's a grammatical piece, now you become blind on top of it. How do you know emotions/ How do you now if someone's laughing? How do you know if someone's upset? You can't see any of that in the body language. So there's a type of, I'm going to say code that deaf/blind know that pro tactile interpreters would know. For example let's say someone's giving a presentation and there are a bunch of people. And obviously as deaf/blind person I cannot see and I am actually presenting so I'm going about presenting and I don't know, is the audience falling asleep? Are they engaged? And so I would have a pro tactile interpreter that would be giving me quote unquote codes on my back that we both know that really are attached more to emotions of the audience, of the environment, may be you know, what room, there would be explanation of what a room looks like that type of thing but, another piece of the pro tactile with relations to the emotions, it's also using it as a type of map perhaps, so let's say there's a table in a room and there is a bunch of people sitting around the table, then a pro tactile could, interpreter or person would sort of use my back as a map to show a diagram of where people are sitting and then be able to identify who is feeling what. Oh, you know, over here is feeling, falling asleep or what have you, so that the deaf/blind person is able to quote unquote see the emotions. Because that is taken away when you are deaf/blind, so I just wanted to tag on this pro tactile is kind, is a newer way of interpreting for deaf/blind as opposed to just the tactile interpreting.   Jeff Thompson: You know it's the things we never think about, that makes perfectly good sense. Such a, it's common sense.   Molly: Yeah.   Jeff Thompson: Another friend of mine, he's an assistant technology instructor down at MSAB. Ken. He showed me a device. He has three devices. It's a, they're cobbled together. A notebook, a refreshable braille, and another interface. And I believe a deaf/blind person could, or does communicate with it. I believe it was a phone. Are you aware of something like this?   Molly: You know that's actually a really good question. It's very challenging to make a phone call or to receive a phone call. There are, my understanding is there are two parts, so in the deaf, you know, the deaf world there is technology galore, you have your video phone, if you're just deaf, you have video phone, you can use that, facetime, all of that, Skype, what have you. Now you add the blindness piece into it, boy that's tough. Because, I mean for me I can still, I haven't quite needed to use a phone as a deaf/blind individual, because I can still see well enough. I can say that when I am using my video phone, I can't necessarily see, if it's a small screen or if it is dark or I can't see on the phone I just need to have my friend, a friend of mine, or an interpreter or something help me on the phone. So, if I were using the phone as a deaf/blind individual then you would really rely on someone to use the tactile sign language to interpret the interpreter or whomever is talking to be able to interpret that. Now there is braille, what you're talking about on mobile devices. You can feel a vibration, you can feel, there are different devices on your IPhone, on you know, different technology, it's actually just quite amazing how crazy technology has taken off to help put folks with disabilities, it's so more accessible now, but as a deaf/blind person, or as a deaf person, or as a deaf person, or as just a blind person you definitely need to have that technology, technology in your hands.   Jeff Thompson: Molly, another question came in. You know you kind of answered this but, did you have to go through going deaf and going blind at two different times or all at once?   Molly: Well, just so you know every individual is different and goes through different emotions when they find out they're going to go blind. Perhaps letís just say it is very emotional, and very difficult, it can be very difficult to go through.so I was first deaf, and what Usher Syndrome means when I was diagnosed at age 10, was that I was eventually going to become blind. Now I'm not, I don't label myself deaf/blind, I mean I, one of my labels is I have Usher Syndrome. I don't worry so much going blind at this point but I do identify as a person that has Usher Syndrome. As far as you know, knowing I'm going to become blind, I would say this point in my life, I do accept it. It was difficult and it took a long time, of course I started out crying and it was very upsetting but I have since spent a lot of time learning how to cope as a deaf/blind person and also educating my family on how to support me. You know, you're going to need to learn braille and you know that type of thing.   Jeff Thompson: You know, I lost my sight later in life and I lost it slowly so I use to be able to use a CC tv quite easily, and so braille, you know I learned it quickly, but I didn't stick with it because I had so many alternative techniques could use. The CC tv, especially with audio and now with digital and stuff that I kind of adopted to listening. But you know if I would have lost it quickly, I think I would have taken to the braille and dug right in. Some people might call me a lazy blind you know.   Molly: Well, and in my opinion really, I, my, well I should say my perspective from the past compared to now, I get what you are saying, I feel that I do need to prepare, I do need to get ready, I mean I can still see but I want to be completely prepared when I do lose my sight, when I do become legally blind. It'll be, it's just easier for me to learn now as opposed to before I don't, it's already going to be a struggle, I don't want to start all over again as a baby to learn all of these skills so my opinion is it is less stressful for me and a lot easier for me to accept if I start preparing myself now you know, my back up plan is I know braille and my friends are understanding what's happening to me and Iím teaching them how to support me and if there is an emergency I, people need to know how to support me and I need to know how to support myself and that, so I'm taking advantage of the sight that I have now to be able to learn how to live as a person that won't have sight potentially in the future.   Jeff Thompson: That's good. That's really good. It's a tough thing to face.   Molly: It is, yes.   Jeff Thompson: Yeah. So in passing time, leisure, what kind of hobbies do you have Molly?   Molly: I love to travel, I love to move about, I love to camp. I like to run. I love to be outdoors, I am an outdoor person. I love to camp, I like to go hiking. I like to socialize with my friends.   Jeff Thompson: Oh I love camping, I love the outdoors. Minnesota you know "The Great Outdoors" you know, way up north, you know.   Molly: Yeah.   Jeff Thompson: Minnesota has a lot to offer.   Molly: Right. My first hobby was biking because bicycle because I knew I wasn't going to be able to drive. Eventually I am becoming legally blind and so I learned how to ride a bike and you know, I am still able to do it during the day, I know, like during the summertime I can do it pretty much all day until, make sure I am home if I am biking by nine. That's when it starts to get dark and dangerous for me to be biking because I cannot see well enough to keep myself safe. So and I say that maybe it depends on the environment, if it's flat and safe I could do it when it is a little dark but I do depend on bicycles a lot right now.   Jeff Thompson: I used to love biking. I still do and you know when you mentioned camping. there is an old saying here in Minnesota, you know, some of my friends think that camping is when room service is 10 minutes late.   Molly: (Laughter) Yeah.   Jeff Thompson: Molly, I know you do a lot of advocating. How do you advocate for someone who is in a similar situation?   Molly: Well, networking is very important. it's very important to have support groups. I wish that I had an advocate when I was growing up. I really didn't have any, I was labeled Usher Syndrome and it was very difficult to get support. It's great to have an organization. Minnesota Deaf Blind, what's it called no no that's not right. Minnesota Deaf Blind Project, no that's not right, let me back up. Deaf Blind Minnesota Project, I don't know the right order of the words, But that has developed and it's very strong support especially for advocates for children that are deaf blind or have Usher Syndrome. Schools really, some schools do have support for deaf/blind, it's I think for children especially it's very important to have a deaf/blind mentor or someone who has Usher Syndrome as a mentor. So the child can look up to that person and say you know, I can do this and I can do that, I can do all of these things. I think that's key. I didn't have any of that growing up and I think that's a very important way to advocate especially for children just to show what you can do. SSB is fantastic as support for deaf/blind and there is other organizations outside of Minnesota that are very supportive.   Jeff Thompson: So, the Minnesota Deaf Blind Project, is that affiliated with the Minnesota Deaf Blind Association?   Molly: No I think it's separate from that, I think the Minnesota Deaf Blind Project is really focused on a youth program for support, I think up until 18 or maybe up until they end high school. So there is an organization for deaf/blind to help deaf/blind not feel isolated and to make sure, and that's for adults so it's a little bit separate. I think Minnesota Deaf Blind Association maybe is for the adults and the project is for the kids. they have workshops and they have fun retreats for you know, like camping, counselors, they have picnics and they just, to keep the kids engaged and active and not isolated is the Minnesota Deaf Blind Project I believe.   Jeff Thompson: Now Molly, you're no stranger to advocacy because you've been recognized by the Tim Mahony award in this area.   Molly: Yes I did win that award yeah and I can explain about that so I, it started really deaf blind adults. I was involved in the deaf/blind community but, well I was actually tapped in to to get involved in deaf/blind community and be a leader in that community for many many years but I never did because I really wanted to focus on school and get all that done so in 2014 when I finished school, I was still getting tapped into to be more of a leader in the deaf/blind community and I felt a little uncomfortable with that just because I didn't feel like I could, I didn't know enough, but I started going to different events and learning more and feeling better and, but I noticed that you know it was hard because I would see folks that had Usher Syndrome that were a little bit more advanced than I was and it was hard for me to see that knowing that was going to be me in the future. But I eventually, I got over that and I learned more and more. And I wasn't, I was basically keeping an open mind, trying to keep a balance with the deaf community and the deaf/blind community. I got so much support from the deaf/blind community and I started to become more active and give more ideas and feedback on things that I thought you know would be helpful ect. And was creative and I was given this award by them. It's a huge honor.   Jeff Thompson: Well congratulations.   Molly: Thank you.   Jeff Thompson: So what social or entertainment venues do you frequent?   Molly: Oh I love movies, I am a big fan of movies, love movies. There is a movie theater that has, you know movie theaters will have closed captions. It's technology, I prefer to have it on the screen but they don't really do that anymore so anyway, I use this type of device and it's a wireless device that you can read the captions on this device as the movie is going on. I love to go to shows, I love to go to plays, that type of thing, often times they are interpreted and I, as long as I sit in front I can usually see the interpreter. So as a deaf person I am able to do that. I like the arts. A variety of arts I'll go and enjoy.   Jeff Thompson: Well that's great. I use a device that actually plays audio into my ear. Now you said that it, actually you can read the text, I was just wondering if somehow they could make that for refreshable braille?   Molly: Good question, I don't know. I've never heard of it, I've never, I am not sure what that would even look like, yeah, usually computers do have the news, or information that you can get in a braille type, as a type of technology for the braille but movies, I don't know. When I become fully blind, If I go to a museum, those kinds of things, like those artsy things as a museum, I mean, I'm not sure if I am going to wanna, I think I still would want to go to that, like maybe the Walker to go see an art exhibit but it would obviously be important to have someone with me to describe every little thing you know. Here is a painting, here are the colors that they used, and here's what the painting is about, and here is what it's called, and here is the artist, and then really describe in detail what the painting is or what the statue is. I would need to have assistance going into detail about what I am looking at.   Jeff Thompson: Makes me think about 3D imaging, 3D printing, I wonder if more and more venues will be starting to have opportunities to you know, touch the art such as using a 3D printer to replicate a piece of art, or a painting.   Molly: Hmm, I have not, I haven't heard of that but I am not surprised. That would be really nice. Gosh, yeah, and to even have technology in the future that's even better than now is, so it's important, it is important to, in whatever environment you're in, it's important to be able to touch as a deaf/blind person. I mean obviously if I am at a play, I'm not going to be able to touch the stage and the actors and that type of thing but having an interpreter there that would be interpreting everything you know the stage, and the actors, and that type of thing, that would be really important to be able to enjoy it.   Jeff Thompson: I remember reading about some technology that was coming out. It was gloves with sensors on it so when a signer was signing, it would actually take that information and feed it into a computer for translation.   Molly: I think I saw something about that on Facebook but I couldn't wrap my head around what it was really meaning. I was also doubtful that technology like that really existed but I have no idea about that. I don't know if that's, I just don't know much at all about that technology.   Jeff Thompson: Molly, what words of advice would you have for someone going through sight loss or hearing loss.   Molly: That's really hard. I'm just thinking back. So this is just my opinion, I mean if if if, if you were, if this is, I mean if, you suddenly became overnight from a car accident or, an illness, and you suddenly became deaf or blind or something overnight, that is tough to deal with and I, I guess the first part I would say is just needing to jump in and you can, the internet is great. you can go online and you can find support groups to help you. You can use friends to help you, social media is fantastic in terms of support. Definitely I would say, I would recommend counseling to help you get through the emotional trauma of losing one of your senses or both of your senses. A counselor can, a good counselor can help you work through the emotions and you can get through it. The important thing is not to allow yourself to stay stuck forever because you can't do it yourself, you've got to tap into a community organization, counselors, friends, family to help you get over the trauma.   Jeff Thompson: Minnesota State Academy for the Deaf and Minnesota State Academy for the Blind. Minnesota Deaf Blind Project and Minnesota Deaf Blind Association.   Molly: Yes.   Jeff Thompson: They all help.   Molly: Yes, absolutely.   Jeff Thompson: Molly, is there anything else you would like to tell the Blind Abilities listeners?   Molly: Yeah, actually I will add one thing. The real important part is we live in the real world and you become deaf, deaf/blind, blind, whatever age you are, there are interpreters, different types of interpreters that will accommodate your different communication need, whether it's tactiles or sign language. there are doctors who can help you, I guess my point is that in this real world there are a lot of things that can help you. Accessibility, accommodations that can help you. Having an SSP is very very helpful to help you go grocery shopping, doing some of the basics in life. So it's not a sign of weakness, it's more of a sign of strength to ask for help and to rely on other people, that doesn't mean you're less independent. When you have a companion, an SSP that comes to help you a couple times a week, when you have an interpreter, and it just opens up the world to you. There are really no excuses to stay home and isolate yourself. There are a lot resources here in Minnesota especially that have organizations, businesses, resources that can help connect you to what you need to be successful, whatever that looks like in your own life.   Jeff Thompson: First of all Molly, I want to thank you very much for taking time out of your day and sharing your journey, your story with all of our listeners.   Molly: Yeah, yeah, it was my pleasure. I'm very very happy to share my story. It helps others.   Jeff Thompson: Molly, your message really rings through to me and I'm sure to a lot of the listeners because there is a point where you have to accept it and face the real world and be part of the real world. that's a great message.   Molly: Exactly, exactly. An important quote that I rely often is "Deaf, blind, hearing blind, whatever your disability is, you can do it. You will be afraid, you will want to isolate yourself, but don't go that route, take advantage of all the wonderful opportunities that are out there to help you achieve what you want to achieve."   Jeff Thompson: That's great, that's wonderful.   Molly: Ooh sorry, I wanted to add one more thing, I did a presentation, when was that, let me think. I was involved with the American Disability Act. There was a TPT in the Minnesota, what is it, the Minnesota Public Access, there was some programming they were doing, I want to say this was last year, a couple years ago. I was involved with that as a deaf/blind can. Talked about you know the ADA and how it makes things accessible for folks with disabilities so that is in the archives you know if anyone wants to look it up.   Jeff Thompson: Oh, we forgot to mention that you're also on the state rehabilitation counsel for Minnesota.   Molly: Correct, I am. Yeah, I a rep for deaf/blind, for the deaf/blind community yes.   Jeff Thompson: Well Molly thank you very much, you're quite an advocate hear in Minnesota and I am sure a lot of people appreciate all of the hard work that you are doing, so thank you.   Molly: Thank you.   Jeff Thompson: I would like to thank Chichow for his beautiful music, and to Pam, the American sign language signer that participated in this interview. (Music) (Multiple voices) When we share, what we see, through each otherís eyes, we can then begin to bridge the gap between dreams and expectations and the reality of blind abilities. Jeff Thompson: For more podcasts with the blindness perspective, check us out on the web at www.blindabilities.com, on Twitter at Blindabilities, download our app from the app store. Blind abilities, that's two words, or send us an email at info@blindabilities.com Thanks for listening.      

Host: Maurice Pickard, MD Guest: Rebecca Alexander Born with a rare genetic mutation called Usher Syndrome type III, Rebecca Alexander has been simultaneously losing both her sight and hearing since she was a child, and was told that she would likely be completely blind and deaf by age 30. Then, at 18, a fall from a window left her athletic body completely shattered. In Not Fade Away, Rebecca tells her extraordinary story, by turns harrowing, funny and inspiring. She meditates on what she’s lost—from the sound of a whisper to seeing a sky full of stars, and what she’s found in return—an exquisite sense of intimacy with those she is closest to, a love of silence, a profound gratitude for everything she still has, and a joy in simple pleasures that most of us forget to notice.Not Fade Away is both a memoir of the senses and a unique look at the obstacles we all face—physical, psychological, and philosophical—exploring the extraordinary powers of memory, love, and perseverance. It is a gripping story, an offering of hope and motivation, and an exquisite reminder to live each day to its fullest.

Host: Maurice Pickard, MD Guest: Rebecca Alexander Born with a rare genetic mutation called Usher Syndrome type III, Rebecca Alexander has been simultaneously losing both her sight and hearing since she was a child, and was told that she would likely be completely blind and deaf by age 30. Then, at 18, a fall from a window left her athletic body completely shattered. In Not Fade Away, Rebecca tells her extraordinary story, by turns harrowing, funny and inspiring. She meditates on what she’s lost—from the sound of a whisper to seeing a sky full of stars, and what she’s found in return—an exquisite sense of intimacy with those she is closest to, a love of silence, a profound gratitude for everything she still has, and a joy in simple pleasures that most of us forget to notice.Not Fade Away is both a memoir of the senses and a unique look at the obstacles we all face—physical, psychological, and philosophical—exploring the extraordinary powers of memory, love, and perseverance. It is a gripping story, an offering of hope and motivation, and an exquisite reminder to live each day to its fullest.

In GBA 196 we get better acquainted with Siobhan. She talks about making comedy, being a sign language interpreter, the politics of marriage, honeymooning in lapland, grief and bereavement, spreading eccentric joy, feminism, being an identical twin and so much more. The conversation focused on Siobhan's breasts much more than either of us were expecting. Siobhan plugs: We Are Funny Variety @ Dirty Dicks: 25th February: https://www.facebook.com/events/807156749349594/ I plug: Tragic Winter @ Hackney Attic: 28th February: https://www.facebook.com/events/1516191711967276/ We mention: Stand Up Tragedy: www.standuptragedy.co.uk/ Tragic Heroes: https://soundcloud.com/standuptragedy/sets/tragic-heroes CUNTH: http://www.cunth.co.uk/ Charley Harrison: http://charleylucyharrison.com/ We Are Funny: http://wearefunnyproject.com/ Tragic Christmas: https://soundcloud.com/standuptragedy/sets/tragic-christmas BSL: http://www.british-sign.co.uk/ SSE: http://www.signedlanguage.co.uk/signsupportedenglish.html Sense: http://www.sense.org.uk/ Usher Syndrome: http://www.sense.org.uk/content/usher-syndrome Disability Challengers: http://www.disability-challengers.org/ Cochlia Implant Video: http://www.dailymail.co.uk/news/article-2590509/Watch-The-moving-moment-deaf-woman-overcome-emotion-HEARS-time-having-cochlea-implants-switched-on.html Ged: https://soundcloud.com/gettingbetteracquainted/gba-31-ged Womanism: http://en.wikipedia.org/wiki/Womanism Louisa Omielan: http://www.iloveluisa.com/ Nadia Kamil: http://nadiakamil.co.uk/ Follow @GBApodcast on Twitter. Like Getting Better Acquainted on facebook. Tell your friends. Spread the word!

Host: Maurice Pickard, MD Guest: Richard King In his book “My Maggie,” Chicago sports anchor Rich King writes a powerful, complex, and memorable love story about his childhood sweetheart and wife of 32 years. Diagnosed with hearing loss at the age of four, Maggie wore cumbersome hearing aids and felt the humiliation of being "different." Slowly, an insidious disease later diagnosed as Usher Syndrome robbed her of vision. But she soldiered on, having fought three different cancers, changed careers in the middle of her life and fought to realize her dreams. Maggie King confronted this progressive disease with courage and dignity throughout her career in nursing and later as a strong advocate for the disabled.

Host: Maurice Pickard, MD Guest: Richard King In his book “My Maggie,” Chicago sports anchor Rich King writes a powerful, complex, and memorable love story about his childhood sweetheart and wife of 32 years. Diagnosed with hearing loss at the age of four, Maggie wore cumbersome hearing aids and felt the humiliation of being "different." Slowly, an insidious disease later diagnosed as Usher Syndrome robbed her of vision. But she soldiered on, having fought three different cancers, changed careers in the middle of her life and fought to realize her dreams. Maggie King confronted this progressive disease with courage and dignity throughout her career in nursing and later as a strong advocate for the disabled.

Host: Maurice Pickard, MD Guest: Richard King In his book “My Maggie,” Chicago sports anchor Rich King writes a powerful, complex, and memorable love story about his childhood sweetheart and wife of 32 years. Diagnosed with hearing loss at the age of four, Maggie wore cumbersome hearing aids and felt the humiliation of being "different." Slowly, an insidious disease later diagnosed as Usher Syndrome robbed her of vision. But she soldiered on, having fought three different cancers, changed careers in the middle of her life and fought to realize her dreams. Maggie King confronted this progressive disease with courage and dignity throughout her career in nursing and later as a strong advocate for the disabled.

Host: Maurice Pickard, MD Guest: Richard King In his book “My Maggie,” Chicago sports anchor Rich King writes a powerful, complex, and memorable love story about his childhood sweetheart and wife of 32 years. Diagnosed with hearing loss at the age of four, Maggie wore cumbersome hearing aids and felt the humiliation of being "different." Slowly, an insidious disease later diagnosed as Usher Syndrome robbed her of vision. But she soldiered on, having fought three different cancers, changed careers in the middle of her life and fought to realize her dreams. Maggie King confronted this progressive disease with courage and dignity throughout her career in nursing and later as a strong advocate for the disabled.