Podcasts about retinitis pigmentosa rp

In this podcast we talk to Dr Jasleen Jolly, Associate Professor at Jolly Vision Science and Honorary fellow at Melbourne University. We are also joined by Yvette Chivers, Helpline Coordinator at Retina UK, who is living with Retinitis Pigmentosa (RP) and experiences CBS.Charles Bonnet Syndrome is phenomenon where some people with sight loss experience visual hallucinations. Tune in to find out more about CBS, Yvette's experience and the work that Dr Jasleen Jolly is doing.Researchers at Cardiff University are currently looking for participants to take part in a 60 minute online survey about experiences of Charles Bonnet syndrome, which is open to anyone with sight loss, regardless of whether they experience hallucinations. The survey asks about the nature of your visual impairment, your experiences of CBS (if any), and your visual imagination. For more information, visit https://tinyurl.com/sight-impairment-study.

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

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

Join us for an inspiring chat with Charlie Kramer, a life coach who's truly mastered the art of living confidently with his disability. We'll dive into his journey with Retinitis Pigmentosa (RP), an inherited retinal condition that shapes his unique perspective on life and teaches us valuable lessons about resilience and acceptance.   Charlie shares his advocacy for mobility tools like the blind cane and opens up about the profound impact his disability has had on his identity. He sheds light on the importance of individuality, respect, and understanding when interacting with people with disabilities. Plus, he shares personal stories that help us understand the delicate balance between offering help and respecting independence.   We'll explore the hidden aspects of living with a disability and discuss societal norms and attitudes towards disabilities. Charlie likens his experience of sight loss to building a puzzle, emphasizing the importance of individual autonomy in navigating life's challenges. He shares his journey of self-discovery, acceptance, and how he's turned his blindness into opportunities for growth.   And let's not forget that Charlie is also a musician. He discusses his immersive and transformative experience, "Singing in the Dark," a blindfolded singing and healing experience that's as unique as it is enlightening. We'll also get insights from his song, "Vision," which beautifully encapsulates his outlook on life.   Join us as we celebrate Charlie's roles in teaching, coaching, and singing, and discover his innovative approach to disability. Tune in and let's embrace and celebrate the diversity of life, both its opportunities and challenges.   

Kiora Pharmaceuticals CEO Brian Strem joined Steve Darling from Proactive to share news the company's plan to broaden the clinical development of KIO-301, a treatment designed for various inherited retinal diseases. The expansion includes initiating a Phase 2 trial which will be controlled, double-masked, randomized, and will involve an ascending-dose. This trial is set to include up to 20 patients suffering from Retinitis Pigmentosa (RP), who will receive doses monthly over a span of 90 days. Strem explained that this move is propelled by encouraging topline results from a Phase I/II clinical trial, which indicated that KIO-301 is a first-in-class small molecule with significant potential to improve vision for patients with RP, even those with extremely low vision or complete blindness. Moreover, Kiora Pharmaceuticals has plans to engage with the FDA in the fourth quarter of 2023. The goal of this meeting is to achieve consensus regarding the study designs, endpoints, and additional requirements necessary to conduct further studies in the United States and Europe. These studies would not only target RP but also extend to other inherited retinal diseases such as Choroideremia (CHM) and Stargardt disease. #proactiveinvestors #kiorapharmaceuticals #nasdaq #kprx #VisionRestoration #Kayo301 #RetinalDiseases #Ophthalmology #ClinicalTrials #MedicalInnovation #HealthcareNews #GeneTherapyAlternative #FDAApproval #PatientCare #VisionResearch #Biotechnology #OrphanDiseases #InheritedConditions #MedicalBreakthrough #EyeHealth #Optometry #FunctionalMRI #HealthTech #FutureOfMedicine #InnovationInHealth #BiotechIndustry #MedicalScience #ScienceAndTechnology #invest #investing #investment #investor #stockmarket #stocks #stock #stockmarketnews

Sherri Eri, is the author of three picture books in the Cool Kitty Series and a standalone picture book titled, “I Am Not An Owl Or Am I?” Sherri was diagnosed in August 2000 with a condition called Retinitis Pigmentosa (RP). It is a form of night blindness that, in her case, caused to lose her usable vision within five years. A graduate of NUS, she suddenly had to rethink her future. But her dream has always been to write picture books and great leaps in technology allows her to write, despite being blind. Hear her life journey from the day she received the unexpected news to overcoming life's challenges. To Order Her Book:https://picturethebook.com/en-sg/pages/buy-our-book

Mary Mammoliti, host of the Kitchen Confession Podcast and the Dish with Mary TV Show, stops by to share her personal journey with Retinitis Pigmentosa (RP) and how she confronted her imposter syndrome, stopped saying sorry and started finding ability in her disability and smiling all the time. Mary found that spending time in the kitchen was therapeutic and launched Mary 2.0 and the podcast and TV show to work with sighted chefs and share adaptive cooking tools and techniques. Mary also answers some hard-hitting questions from John while gracefully deflecting ridiculous Canadian language jokes.  Get your #DontWait Merch: https://amblind.creator-spring.com/  :: PODCAST LINKS :: For show notes, guest profiles, photos, blog and more information, visit AmbiguouslyBlind.com and connect on:    Instagram | Facebook | Twitter | Linkedin  Like what we're doing? Support us: Buy Me A Coffee  This is a listener supported podcast.  Please consider donating to build and sustain our community  :: EPISODE LINKS :: Guest bio & social links: Mary Mammoliti ::  https://www.ambiguouslyblind.com/guests/mary-mammoliti/   Kitchen Confession Podcast :: https://www.kitchenconfession.com/   

Sometimes your body knows innately, well before those reach your brain and sink their hooks into your consciousness. Of course, it's also entirely possible that Blindsided's title was just one of those strange bits of cosmic irony. The word arrived well before Mark Erelli was diagnosed with Retinitis Pigmentosa (RP) a degenerative eye condition that almost invariably leads to blindness. The diagnosis would arrive in the summer of 2020, triggered by fuzzy vision during an outdoor live show. It's a struggle which informs his latest, Lay Your Darkness Down. It's a bid to relay a life altering condition, both literally and metaphorically, in a bid to capture broader themes. Hosted on Acast. See acast.com/privacy for more information.

“Marketing publicist”, podcaster and advocate, Lis Malone stops by to share her personal journey with Retinitis Pigmentosa (RP) and how she developed a #DontWait mindset to move forward through the uncertainty of her diagnosis and future. Lis and John compare notes on brushes with danger and reflect on the tough decision to surrender their driver's licenses, and its underlying impact on one's psyche. She also talks about the good time she has as the lone female and American voice on the long-running AT Banter Podcast. Lis, a New Jersey Devils enthusiast, makes a side bet for this year's Stanley Cup playoffs and manages to get John to speak a distinct four-letter word just after the puck drops, earning the distinguished “E” rating for this banter-filled episode. As a professional marketer and publicist for authors and their books, Lis has worked with many authors including New York Times Best Selling Authors, Steven Hartov and Jerome Preisler, both of whom she mentions in this discussion. Get your #DontWait Merch: https://amblind.creator-spring.com/  :: PODCAST LINKS :: For show notes, guest profiles, photos, blog and more information, visit AmbiguouslyBlind.com and connect on:    Instagram | Facebook | Twitter | Linkedin  Like what we're doing? Support us: Buy Me A Coffee  Visit LisMalone.com  This is a listener supported podcast.  Please consider donating to build and sustain our community  :: EPISODE LINKS :: Guest details: Lis Malone: https://www.ambiguouslyblind.com/guests/lis-malone/ John Grimes AT Banter Episode: https://atbanter.com/2023/03/15/at-banter-episode-327-john-grimes/ 

On January 4, 2023 something new was revealed; the World Blind Herald went live, choosing that date because that is Louis Braille's birthday. This week on Outlook we speak with its founder, publisher, and editor in chief Chris Hofstader. We begin with Chris sharing about his life including the early days when he was diagnosed with Retinitis Pigmentosa (RP) as a child, sharing all the things he was into just like all the other boys. He also shares his time as the vocalist in a punk rock band, lining up stories of his youth with the early, unknown years of the AIDS crisis in New York. From punk to computer sciences, the first half of this week's Outlook Chris leads us through the years when his RP continued, he searched to find his place in the working and blindness world, seeing adaptive technology evolved from its earliest days. With his background in STEAM (science, technology, engineering, the arts, and mathematics) , writing was a natural next step for Chris who, on the second half of the show, tells us about some of the topics and articles published on WBH since its inception and prototype days through to its publication at the beginning of the year. On the World Blind Herald's site, find weekly Blindness Briefs with news stories about what blind people are up too all over, featured stories and other resources provided by blind people of all types, and a list of impressive bios of all those advisors and contributing writers on the team and involved in the project in some way. And we can't complete this conversation without hearing from our guest about the policy of WBH on politics, specifically blindness politics which is something we've experienced ourselves since getting involved in advocacy in our thirties. Editor in chief Chris Hofstader is with us, sharing the publication's mission, which is to include as many diverse perspectives from blind people globally; this being Outlook's main mission as well. Things like sports, advocacy, business, and crime are just some of the topics you can find. So go here to check out the World Blind Herald and give them a read because they want to support the space for other blind creators and entrepreneurers as they're just getting started publishing the perspectives of as many blind people as possible: https://www.worldblindherald.com/ And, if you're blind, consider advertising with them or writing for them.

Dr. Laurie Mileur was diagnosed with Retinitis Pigmentosa (RP) in 1992 at the age of 40. When I met Laurie several years ago, I was impressed by her positive and healthy approach to vision loss. We're proud to have Laurie on the Board of Directors for the GO See Foundation. ~ Allyson Buerger (founder, GO See Foundation)

Episode 69 talks about healing from intergenerational trauma, featuring Ebony Uamaki. Listen now!Ebony Uamaki is an Intuitive Reader, Coach and Inspirational Speaker based out of Australia. She's a mother of 4 under 5 and also has a rare degenerative eye disease called Retinitis Pigmentosa (RP) which has left her completely blind. In many aspects of her life, her disability has challenged her, but when it comes to her work as an Intuitive Reader, it has become her greatest gift and in many ways her insight has become her eyesight.During Ebony's childhood, she experienced significant sexual, physical, emotional and mental abuse, as well as family violence and losing a parent to suicide. Through the many complexities in her life as well as navigating a disability, Ebony's mental health began to decline. At the age of 16, Ebony attempted suicide and through this, she realized that if she wanted to change, she would have to be the one to create it, which is when she embarked on journey of self discovery, healing through therapy, meditation and self help books. Although the journey of healing has not been a straightforward one, it's allowed her to connect more deeply to her spirituality and intuition which in-turn has greatly impacted her ability to work with people the way she does.Ebony's mission is to assist people to see the light that they see in others in themselves through being a mouthpiece for the unspoken parts of them. Whether she's connecting with you in a private session or through social media, she uses both her intuition and life experiences to show her clients that it is not your situation that defines you, it is your willingness to work on yourself that does.You can follow Ebony on Instagram. Send an email to book a reading at ebonyuamaki@outlook.com. Listen to her new podcast, Don't Drown on your favorite podcast streaming platform.Listen this week as Ebony & I chat about:Growing up in a tumultuous home as a childSurviving physical, verbal, sexual and psychological abuse early in life as well as an attempted suicide in her teensBeing diagnosed with Retinitis Pigmentosa at the age of 2 and living life completely blindHer journey behind becoming an Intuitive Reader and CoachNavigating life and it's challenges as a mompreneurHealing modalities that have helped her own personal development journeyAnd more!Take a listen this week as Ebony's shares her own personal struggles around healing from intergenerational trauma and what steps she took to help on her journey. Generational trauma is something we all experience, no matter your race, background, religion, etc. Normalizing having these tough conversations is how we can start the process to break the cycle. Thank you for sharing your truth and vulnerability with my audience, Ebony!

During a performance in summer 2020, Mark Erelli looked down at his guitar neck and couldn't believe what he saw. Or rather, what he couldn't see: his fingers on the frets. Soon after, a diagnosis of Retinitis Pigmentosa (RP) would bring some answers, but it also yielded new questions. Does diminished eyesight correlate with lesser insight? Does your songwriting change when your perception of the world around you changes? These questions, and Erelli's hunt for creative agency, are at the heart of his new album Lay Your Darkness Down.  Mark stops by to share a bit about his early RP journey and talk to John about his new album. Although his 13th solo record, Mark explains why Lay Your Darkness Down is the first record he felt like he needed to make in this new season of life. Mark and John discuss lyrical comprehension, Mark's musical influences and play snippets from Marks new record.    :: SHOW LINKS :: For show notes, guest profiles, photos, blog and more information, visit AmbiguouslyBlind.com and connect on:    Instagram | Facebook | Twitter | Linkedin  Like what we're doing? Support us: Buy Me A Coffee This is a listener supported podcast.  Please consider donating to build and sustain our community  :: GUEST LINKS :: More details: Mark Erelli: https://www.ambiguouslyblind.com/guests/mark-erelli/ Mark's website: https://www.markerelli.com/  Mark's music on Amazon: https://amzn.to/3lthisC   

As a photographer well into her professional career, Robyn Rachel sensed something was changing in her body. After a routine eye exam, she was referred to a specialist and diagnosed with Retinitis Pigmentosa (RP) and Usher's Syndrome (Usher's 2A). Robyn decided it was time to pivot from weddings to see the world while she could. Now, as the Silver Lining Explorer, Robyn lives fully, travels often and explores always! She and her family travel the globe in search of incredible experiences while capturing stunning images to document and share her story. :: SHOW LINKS :: For show notes, guest profiles, photos, blog and more information, visit AmbiguouslyBlind.com and connect on:    Instagram | Facebook | Twitter | Linkedin This is a listener supported podcast.  Please consider donating to build and sustain our community of :: GEUST LINKS :: Connect withRobyn at: https://www.ambiguouslyblind.com/guests/robyn-rachel-lindema/  Robyn's Websites  Silver Lining Explorer: http://silverliningexplorer.com  Photography: http://robynrachelphotography.com/   

Link to bioRxiv paper: http://biorxiv.org/cgi/content/short/2022.10.04.510882v1?rss=1 Authors: Santhanam, A., Shihabeddin, E., Wei, H., Wu, J., O'Brien, J. Abstract: Inherited retinal degenerative diseases such as Retinitis Pigmentosa (RP) result in progressive loss of photoreceptors until an individual is completely blind. A hallmark of these diseases is progressive structural and functional remodeling of the remaining retinal neurons as rod photoreceptors are lost. While many studies focus on regenerative or bionic therapies to restore vision, extensive remodeling of retinal cell types throughout the course of retinal degenerative diseases stands as a barrier for successful implementation of these strategies. As a window onto the molecular basis of remodeling, we have performed a comparative analysis of single-cell transcriptome data from adult Zebrafish retina of wild-type and a P23H mutant rhodopsin model of RP. In addition to providing a benchmark atlas of retinal cell type transcriptomes in the wild-type adult Zebrafish retina, we find transcriptional changes in essentially all retinal cell types in the P23H model. Increased oxidative stress is evident not only in the rods but also in cones, retinal pigmented epithelium (RPE) and to a lesser extent in amacrine and bipolar cells. Metabolic changes increasing oxidative metabolism and glycolysis are found in rods and cones, while evidence of increased activity of the mitochondrial electron transport chain is found in retinal ganglion cells (RGCs). Evidence of synaptic remodeling is found throughout the retina, with changes to increase synaptic transmission in photoreceptors and bipolar cells, increased ionotropic glutamate receptors in amacrine and ganglion cells, and dendritic and axon remodeling throughout. Surprisingly, RPE, cones and bipolar cells in the P23H retinas also have increased expression of genes involved in circadian rhythm regulation. While this model system undergoes continuous regeneration, ongoing remodeling impacts the entire retina. This comprehensive transcriptomic analysis provides a molecular road map to understand how the retina remodels in the context of chronic retinal degeneration with ongoing regeneration. Copy rights belong to original authors. Visit the link for more info Podcast created by PaperPlayer

Griffin Pinkow is the founder of the Foreseeable Future Foundation, a nonprofit whose mission is to help individuals who are blind or visually impaired through sports and recreation. Griffin has run four marathons, created his own non profit organization to help the visually impaired community, and is now attempting to make the Paralympic Team in Tandem Cycling, all by the age of 30. Going from a healthy, active teenager to slowly losing his sight due to a diagnosis of Retinitis Pigmentosa (RP) at age 11, Griffin has demonstrated what it means to persevere through unexpected change, and has truly made a difference in hundreds of lives others by showing them how to stay active and endure in the face of challenge. Listen as we discuss the work of FFF, tandem cycling, Griffin's entire journey, and how he's turned his own story into major impact and support for others.

Host of the Hindsight Is 20/200 podcast, Chad Bouton, stops by to share about his journey growing up with Retinitis Pigmentosa (RP) . The ups and downs and advise he would give his younger self to take advantage of his disadvantages. Chad also discusses the blessing in disguise that lead him into podcasting, some of the amazing connections he has made and the big plans for the future. Connect with Chad at: https://www.ambiguouslyblind.com/guests/chad-bouton/  Listen:  Hindsight Is 20/200 For show notes, guest profiles, photos, blog and more information, visit AmbiguouslyBlind.com and connect on:    Instagram | Facebook | Twitter | Linkedin This is a listener supported podcast.  Please consider donating to build and sustain our community of

Episode 070 | Yuh! I'm back with another SOLO episode! In this one, I cover a variety of topics that are relevant to the disability community. I discuss the potential harmful side effects of erectile dysfunction medication for men living with Retinitis Pigmentosa (RP). I give my opinion on Molly Burke's recent appearance on "The Daily Show" with Trevor Noah. I go DEEP on how I believe inclusive + accessible language targeted towards the disability community is misunderstood and unfairly grouped in as part of the "woke" agenda. On the topic of inclusive language, I discuss recent controversies involving Kamala Harris, Beyonce, and Matt Walsh. I also answer some amazing audience questions! I took some risks with this episode, but I had FUN in the process. Stay Transparent! -------- For bonus episodes + exclusive content, join the SEE-THROUGH FEW over on Patreon. Visit: https://patreon.com/seethroughpod Have a question for me? Want your question to be featured + answered in an episode? Email me (theseethroughpodcast@gmail.com) or DM me a video of your question and it may end up in an episode! Watch Molly Burke's appearance on "The Daily Show" with Trevor Noah: https://www.youtube.com/watch?v=dbNDmY1-vSs -------- Subscribe: https://bit.ly/3JRSPEO Website: https://www.seethroughpod.com/ Instagram: https://instagram.com/seethroughpod TikTok: https://www.tiktok.com/@seethroughpod Twitter: https://twitter.com/seethroughpod Facebook: https://www.facebook.com/seethroughpod

Ron talks to Eddie and his wife Katie Zingleman about Eddie's lifelong battle with RP, a group of eye disorders that cause progressive vision loss.  Eddie was thrown several roadblocks in life but talks about his resiliency to overcome and today  his ability to make handcrafted country home furnishings . Links:       www.tennesseewoodworks.com                 https://itsawrapwithrap.com                 #HC Universal Network

Ron talks to Eddie and his wife Katie Zingleman about Eddie's lifelong battle with RP, a group of eye disorders that cause progressive vision loss.  Eddie was thrown several roadblocks in life but talks about his resiliency to overcome and today  his ability to make handcrafted country home furnishings . Links:       www.tennesseewoodworks.com                 https://itsawrapwithrap.com                 #HC Universal Network

Ron talks to Eddie and his wife Katie Zingleman about Eddie's lifelong battle with RP, a group of eye disorders that cause progressive vision loss.  Eddie was thrown several roadblocks in life but talks about his resiliency to overcome and today  his ability to make handcrafted country home furnishings . Links:       www.tennesseewoodworks.com                 https://itsawrapwithrap.com                 #HC Universal Network

Speakers: Rachel Huckfeldt, MD, PhD and Jami Kern

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

At the age of 22, while managing a local movie theater, Ray was diagnosed with Retinitis Pigmentosa (RP). This is Ray's story of how he adapted to blindness, discovered new dreams, and is living a happy life. Topics discussed in part 1 include Ray growing up with Deaf sisters, his diagnosis of RP, and how he dealt with incurable progressive blindness. We would love for this podcast to be about more than us. If you would like to tell your disability story, drop us a line at cripparenting@gmail.com.

At age 28, Amy Boivard was diagnosed with Retinitis Pigmentosa (RP) and declared legally blind. RP is a hereditary, degenerative eye disease that results in 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. She is currently undergoing genetic testing to discover the cause of her hearing 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 now under the auspices of the American Printing House. In 2016, Ohio Valley University, Amy's undergraduate institution, awarded her the Distinguished Medal of Literature for Mobility Matters. 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. 

Damage to the optic nerve typically causes permanent and potentially severe loss of vision, as well as an abnormal pupillary reflex, which is diagnostically important. The type of visual field loss will depend on which portions of the optic nerve were damaged. Age related macular degeneration or AMD is a breakdown of the eye's macula and pretty common in people over the age of 65. The macular is a small area of the retina that is responsible for central vision and seeing fine details. Retinitis Pigmentosa (RP) is a group of genetic disorders, rare (1 in 4,000 people worldwide), that involve the loss and breakdown of rod and cone cells in the retina. RP is an inherited disorder due to harmful mutations in any of more than 50 different genes.

Lauren Lajoie was diagnosed with Retinitis Pigmentosa (RP) at the end of her studies at Cal Poly University in San Luis Obispo. As long as I've known her, she has been fun and fearless. Lauren is an inspiration to me and I hope that you find her story is an inspiration for you as well. ~ Allyson Buerger (founder, GO See Foundation)

Richard (53) was diagnosed with Retinitis Pigmentosa (RP) shortly after being commissioned as a 2nd Lieutenant in the USMC in 1989. Richard worked as a school psychologist for 10 years and as a part-time lecturer at CSU Sacramento prior to losing the majority of his vision.  He finds purpose and passion in life through endurance sports and serving as a resource to visually impaired endurance athletes around the world. Richard is a 4-time Boston Marathon finisher and has completed 22 marathons, three 50-mile endurance runs, and was the 2nd visually impaired runner in the USA to complete a 100-mile run.  Richard was also the 2nd visually impaired triathlete to complete Ironman in less than 12 hours, and the 3rd to complete  a Half-Ironman in under 5 hours. He founded United in Stride where runners can sign up to be visual guides and visually-impaired runners can find a guide near them. Be sure to take a moment to help out our very own OCR running friend Helene Neville. She needs to raise money for her cancer treatment. Visit her Go Fund Me right here. Additionally, Nicholas & Fundy discuss who is the craziest runner in the Strava Run Club, the upcoming Dig Your Grave marathon. What new record was broken that we will never attempt. Who has completed their 100th 100 miler? And be sure to join up for the OCR Virtual Beer Run. What Old Crazy team will be the winner this year?

In this episode, the host Alex Sparks talks with Emily Zilka, a young girl diagnosed with Retinitis Pigmentosa (RP) nearly 10 years ago, who is currently on a path of self love, care and prosperity.  The two discussed acceptance of the disease, societal lapses concerning individuals with disabilities and her time at the aduldt transitional program after high school.  One of Emily's biggest passions in life is fashion.  You can see her modeling western fashion on her instagram @emily_zilka.  

Juan Alcazar is a Film Maker and YouTube Creator and you can find his work on YouTube at JC5Productions. Juan joined Jeff Thompson in the Blind Abilities Studio to talk about his journey with Retinitis Pigmentosa (RP) and his passion for making films and videos. Storytelling is something Juan took to at a young age and he continues his passion as he embraces his sight loss and the blindness community he found once he stopped denying his loss of vision. I really enjoyed meeting Juan as I have followed his work over the years and known him through the social media networks and this was our first time really meeting up. Juan has a genuine kind personality of which you will hear as he talks about his collabs, community and passions for storytelling. Be sure to visit his social media links below and enjoy his very descriptive video and film creations. You can check out Juan’s creative works on his YouTube Channel at JC5Productions. Follow Juan on Twitter @JC12209  and stay up to date with all the latest from Juan on his Facebook page at JC5Productions Contact Your State Services If you reside in Minnesota, and you would like to know more about Transition Services from State Services contact Transition Coordinator Sheila Koenig by email or contact her via phone at 651-539-2361. Contact: 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 Storeand Google Play Store. Check out the Blind Abilities Communityon Facebook, the Blind Abilities Page, and the Career Resources for the Blind and Visually Impaired group

Victor Ekwueme is a visually impaired Information technology (IT) professional. He holds a Computer Science Bachelor's degree from the University of Lagos and two Masters degrees. One from the University of Nottingham, UK and the other from The University of Dundee, UK where he studied MSc IT and MSc Intelligent Computational Systems respectively. On returning to Nigeria from the UK, his eyesight deteriorated severely due to a rare disease called Retinitis Pigmentosa (RP). Victor had to learn new skills to cope with everyday life especially in his career as an IT Consultant. He learnt some braille and also other skills using his mind such as memorisation techniques and mental calculations. Victor has spoken in several conferences about overcoming his struggles and appeared on several online platforms i.e newspapers and digital magazines. He further started an academy (called MetaProgramming Academy) to teach people how to learn metacognition skills through computer programming. He teaches the Python programming language and uses metacognitive skills to teach such skills. His vision is to disseminate this knowledge to eager people willing to learn not just computer programming but mental tools and techniques that will guide them in learning the language. These techniques could be adapted to other subjects if the student is creative. Victor works with Super Digital Highways (Nig.) Ltd. as a Technical Consultant with the Odoo Enterprise Resource Planning (ERP) software. He has over 15 years working experience in IT ranging from Software Development, Networking, and more recently, Data Science. He does not let his vision weigh him down but rather, uses it to galvanise and inspire people to want to better themselves. --- Send in a voice message: https://anchor.fm/future-school-leaders/message

Patricia O’Connell interviews Joe Strechay, an entertainment media consultant for blindness and disability employment initiatives. They discuss Joe’s childhood, his interest in representation and inclusivity for persons with blindness, low vision, and disabilities, his career, and the opportunities in entertainment today for persons with low vision, blindness, or disabilities. The door is open but we have further to go.   Listen in to learn what your company can do to foster representation and inclusivity in your hiring practices and your products and services. Remember all your audience. Key Takeaways: [:21] Patricia O’Connell welcomes Joe Strechay to CEO Stories on This is Capitalism. [:50] Joe is in Toronto, Ontario, Canada in quarantine, preparing to get back to Season 2 of Apple TV+’s See. Joe was an associate producer on Season 1. He was in-charge of the blindness-related aspects of the show. He has been promoted to Producer. [1:15] See is a science fiction show set hundreds of years in the future, in a world with a small population and universal blindness caused by a viral apocalypse. It tells the story of a family with a set of twin children born with vision. [2:51] Joe grew up in New Jersey. Joe and his mother were both diagnosed with Retinitis Pigmentosa (RP), a degenerative eye condition. At 19, Joe was legally blind. Joe did not have the services that most people have in preparation for school, education, and life.[3:27] On leaving college, Joe sought help and was taught orientation and mobility (O&M), which is traveling with a white cane or with a guide dog, daily living skills, technology, and all the things that help you become a successful and independent individual who is blind. [4:13] As a child, Joe had an IEP for school, but his vision deteriorated gradually from the outer edge, eventually narrowing to a small spot, but within that spot, he could see clearly. By his first semester in college, he had lost most of his vision. He tried to get help, but no one was available to help him. [5:29] Joe did get some assistance from the Disability Student Services at East Carolina University where he was a college student. [6:10] At age 19, Joe had low vision, and was legally blind. It was like looking through a straw. When he was 18, a doctor told him off-handedly at the end of an appointment, “Yeah, you’ll probably be totally blind by the time you’re 25. Pay at the front. Have a good day.” [7:56] Joe’s career plan was to go into public relations and professional sports marketing. He had played a lot of sports growing up. Joe got involved in public relations with the East Carolina communications organization doing PR and marketing work for nonprofits in North Carolina. He enjoyed it. He sought internships and jobs. [8:35] Joe went to New Jersey and New York City to intern and finish his degree. He interviewed with pro hockey and basketball teams. He interned for a marketing firm that worked with the NFL, racing, pro golf, and more. Then, there was 9/11 and the economy dropped into a recession. There was no opportunity to be hired by the company. [9:27] Joe started to face the fact that he was visually impaired as he went on interviews. He was still learning the skills to become independent. He searched for any job to pay the bills. [9:44] He went in for a substitute teaching job at the Calais School. They offered him a teacher’s assistant position in physical education. Joe did that for two years. There were two students with visual impairments. Joe started working with them, which started him thinking about working with visually impaired individuals. [10:08] Joe was already getting services from the New Jersey Commission for the Blind and Visually Impaired. They talked to Joe about fields in education and rehabilitation of disabilities. Joe wanted to give people the opportunity for services that he hadn’t had. [10:29] Joe went to Florida State University in Tallahassee and studied visual disabilities and teaching people who are blind or low-vision how to travel, how to access their education, and to transition from school to employment. He wanted to make an impact for individuals. Employment became a passion for him.[11:14] With his media background, he started looking at portrayals of minority characters and blindness and disability in movies and on television. He did a study about minority and gender portrayals on the Disney Channel. Joe had always been obsessed with movies and television but hadn’t imagined working in the industry. [13:23] Joe found a job working in the U.S. and abroad advising around employment and services for people who are blind. As a hobby, Joe started writing about the portrayal of blindness and critiquing it in blog posts and articles. [13:55] Some media companies started contacting Joe’s employer for casting assistance for commercials and documentaries. Joe helped the writers’ room for three episodes of the USANetwork show Royal Pains, regarding a character who was blind. [14:35] Next, Netflix called about an anonymous project, Marvel’s Daredevil, for consulting around the main character. Most consultants around blindness issues for television or film are people who are sighted. Netflix interviewed and hired him for Season 1 as a show advisor. He advised on scripts and props and helped actors. [16:44] Joe teaches people on a show how to identify individuals. The first method is to put the person before the disability: a person who is blind (or low-vision) or a person who has a disability. The second method is for someone who chooses to identify as a blind person or a disabled person. Allow them to say how they choose to be presented. [17:55] Joe is a person who is blind. He is more than just his blindness. It just means he does things in a different way. He is not offended if you call him a blind person. [18:58] Joe found working on Daredevil very enlightening. After Season 1, he continued on his work with professionals serving the blind community. He became Director of the Bureau of Blindness & Vision Services for the Commonwealth of Pennsylvania, and the Thursday before he started he got a call to help with Netflix’s The OA. Because of his new job, he commuted to work every weekend with them. [21:02] Joe enjoyed consulting but he had a full-time job. He kept getting offers that he turned down because they weren’t the right opportunity for him. He wasn’t looking for another job. [21:17] Joe got calls from the executives, directors, and creators of Peaky Blinders, Hunger Games, and other shows, about an opportunity they were developing with Apple. Joe started consulting and eventually chose to leave his employment running services for Pennsylvania and moved to British Columbia to start working and prepping. [22:15] The opportunity was for See. Joe started as a blindness consultant and the role grew. The executives believed in Joe and the work he did. He advised choreographers and actors. He had an assistant who audio-described for him what was going on. That is a personal assistant who helps with the organization, and describes the sets for Joe. [23:40] By Episode 3, Joe stood near the director. For Episodes 4 and 5, there was a new director, who told Joe to be next to him for every shot. He helped block every scene, figuring out what the actors might be paying attention to in the environment and thinking about things that should be included. [24:20] From the beginning, Apple was committed to hiring people who were blind or low-vision as actors and background performers. Joe became responsible for accessibility and assistive technology, including Braille labeling and signage for the employment office and accessible scripts. [25:42] Actors who are blind or low-vision bring authenticity. They have to be authentic to the world of See. A civilization built without vision for hundreds of years does not have eye contact. Personal space is different. There was a team of people working together to develop this world. [27:06] Apple is committed to making sure that persons who are blind are represented responsibly. Blindness is not all one flavor. It comes in shades and sizes. [28:37] There is a process from representation to inclusion. Joe studied that in his undergraduate work at ECU with Dr. Linda Kean in the communications department. First, Persons with blindness, low vision, or disabilities are presented as characters in the show. Then, they are provided professions of legitimacy and authority. Then they move into general character roles. [29:40] Joe would see himself represented in the media most often as a person with blindness lying in a bed in a hospital or walking by on the street. He wondered when he would be represented as a character. Apple TV+’s See is a story of a world almost entirely of people with blindness, as villains, heroes, warriors, lovers, parents, etc. [30:30] People with blindness are in the world doing great things. Joe’s friend, Erik Weihenmayer, summited Mount Everest, climbed an ice peak, and kayaked the Colorado River — totally blind. Joe has friends who are blind who work as mechanics, carpenters, and in all kinds of professions. [31:47] There are more portrayals of blindness and visual impairment and other disabilities in the media now than there used to be. Actors who are blind or low-vision are getting opportunities, and they are now being cast for their talents as well as their physical traits. [32:40] People who work on See move on to other shows and give more opportunities to persons with disabilities. Joe gives an example.[34:09] Allie Strucker played Ado Annie in a wheelchair in Oklahoma on Broadway and won a Tony Award for it. [36:29] Persons with disabilities are still under-represented in television and movies. Joe says “We don’t see ourselves as often, getting those opportunities within those portrayals.” The numbers are growing thanks to the work of a lot of people. [37:45] Meaningful representation in media matters, such as showing people who are blind or low-vision doing different types of professions, not just lying in a bed or walking by. There is a lot of disbelief and misconception about what persons with disabilities can do. Media changes perceptions.[38:48] The production of See has zero tolerance for disrespect for persons with blindness or disability. They have built an inclusive environment to make sure all cast members can get to difficult locations with the accommodations they need. [41:22] If you have a business, you want to have a company environment where people are comfortable to disclose their disabilities because they might need accommodations and tools to do their job successfully. 20% or more of your customers are persons with disabilities. Consider the whole population with your products or services. [44:53] If you’re not sure if your website is accessible, it’s probably not. You need testers who are blind or low-vision. Joe recommends working with Disability:IN and the Council of State Administrators of Vocational Rehabilitation. [47:28] When you hire a person with disabilities, accommodations are not a huge cost. Persons with disabilities stay longer in a job and get there on time. They put in the work. They make sure the quality of the work is up to specifications. They appreciate the opportunity. [48:19] Disability touches everyone in the world. October is National Disability Employment Awareness Month (NDEAM). [50:59] Patricia thanks Joe Strechay for being on the podcast, This Is Capitalism.   Mentioned in This Episode: Joe Strechay See Retinitis Pigmentosa Orientation and Mobility SkillsWhite CaneGuide Dogs IEP East Carolina University The Calais School New Jersey Commission for the Blind and Visually Impaired Florida State University Disney Channel Royal Pains USANetwork Marvel’s Daredevil The OA Apple TV+ Peaky Blinders Hunger Games Movies Dr. Linda Kean, East Carolina University Erik Weihenmayer mountain climber This is Us The Politician Away Fox Corporation Netflix The Old Man Ali Stroker Oklahoma! Revival Glee Paralympics Disability:IN Disability Equality Index Council of State Administrators of Vocational Rehabilitation National Disability Employment Awareness Month (NDEAM) American Printing House for the Blind

Retinitis Pigmentosa (RP), a genetically inherited disease that affects the photoreceptors at the back of the eye, leads to blindness. Kristin Macdonald was told she had RP at age 31 - a diagnosis that vaulted her into advocacy. She shares her story of living with blindness, participating in clinical trials, and hope for the future. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 36433]

Retinitis Pigmentosa (RP), a genetically inherited disease that affects the photoreceptors at the back of the eye, leads to blindness. Kristin Macdonald was told she had RP at age 31 - a diagnosis that vaulted her into advocacy. She shares her story of living with blindness, participating in clinical trials, and hope for the future. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 36433]

Retinitis Pigmentosa (RP), a genetically inherited disease that affects the photoreceptors at the back of the eye, leads to blindness. Kristin Macdonald was told she had RP at age 31 - a diagnosis that vaulted her into advocacy. She shares her story of living with blindness, participating in clinical trials, and hope for the future. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 36433]

Retinitis Pigmentosa (RP), a genetically inherited disease that affects the photoreceptors at the back of the eye, leads to blindness. Kristin Macdonald was told she had RP at age 31 - a diagnosis that vaulted her into advocacy. She shares her story of living with blindness, participating in clinical trials, and hope for the future. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 36433]

Retinitis Pigmentosa (RP), a genetically inherited disease that affects the photoreceptors at the back of the eye, leads to blindness. Kristin Macdonald was told she had RP at age 31 - a diagnosis that vaulted her into advocacy. She shares her story of living with blindness, participating in clinical trials, and hope for the future. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 36433]

Retinitis Pigmentosa (RP), a genetically inherited disease that affects the photoreceptors at the back of the eye, leads to blindness. Kristin Macdonald was told she had RP at age 31 - a diagnosis that vaulted her into advocacy. She shares her story of living with blindness, participating in clinical trials, and hope for the future. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 36433]

Retinitis Pigmentosa (RP), a genetically inherited disease that affects the photoreceptors at the back of the eye, leads to blindness. Kristin Macdonald was told she had RP at age 31 - a diagnosis that vaulted her into advocacy. She shares her story of living with blindness, participating in clinical trials, and hope for the future. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 36433]

Retinitis Pigmentosa (RP), a genetically inherited disease that affects the photoreceptors at the back of the eye, leads to blindness. Kristin Macdonald was told she had RP at age 31 - a diagnosis that vaulted her into advocacy. She shares her story of living with blindness, participating in clinical trials, and hope for the future. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 36433]

Retinitis Pigmentosa (RP), a genetically inherited disease that affects the photoreceptors at the back of the eye, leads to blindness. Kristin Macdonald was told she had RP at age 31 - a diagnosis that vaulted her into advocacy. She shares her story of living with blindness, participating in clinical trials, and hope for the future. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 36433]

Retinitis Pigmentosa (RP), a genetically inherited disease that affects the photoreceptors at the back of the eye, leads to blindness. Kristin Macdonald was told she had RP at age 31 - a diagnosis that vaulted her into advocacy. She shares her story of living with blindness, participating in clinical trials, and hope for the future. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 36433]

In the fourth episode of Noisy Balls, I had the great honour of speaking with a legend of the Sussex Sharks VI cricket team Ian (Tiny) Morris.Ian has led a rather unusual and varied life, starting off with him working in the bio chemistry field and leading right through to him now being employed for The Guide Dogs For The Blind Association (UK).He even manages to find time to be on his very own podcast Pompy Politics Podcast, so go and check that out for some quirky political narrative.Ian only came to be involved in VI cricket in 2002, as he knew nothing of blind sport before then. Ian's eye condition is Retinitis Pigmentosa (RP).Retinitis Pigmentosa (RP) is a group of rare, genetic disorders that involve a breakdown and loss of cells in the retina — which is the light sensitive tissue that lines the back of the eye. Common symptoms include difficulty seeing at night and a loss of side (peripheral) vision.RP is considered a rare disorder. Although current statistics are not available, it is generally estimated that the disorder affects roughly 1 in 4,000 people, both in the United States and worldwide.RP is an inherited disorder that results from harmful changes in any one of more than 50 genes. These genes carry the instructions for making proteins that are needed in cells within the retina, called photoreceptors. Some of the changes, or mutations, within genes are so severe that the gene cannot make the required protein, limiting the cell's function. Other mutations produce a protein that is toxic to the cell. Still other mutations lead to an abnormal protein that doesn't function properly. In all three cases, the result is damage to the photoreceptors.Photoreceptors are cells in the retina that begin the process of seeing. They absorb and convert light into electrical signals. These signals are sent to other cells in the retina and ultimately through the optic nerve to the brain where they are processed into the images we see. There are two general types of photoreceptors, called rods and cones. Rods are in the outer regions of the retina, and allow us to see in dim and dark light. Cones reside mostly in the central portion of the retina, and allow us to perceive fine visual detail and color.I would like to thank Ian for popping on to episode four of Noisy Balls and for telling us his thoroughly interesting story about his involvement in VI cricket, as well as for enlightening all of our listeners with his account on how he managed to be so positive with the news of his blindness at nineteen and to still go about achieving what he has since that period of his life.Noisy Balls is proudly sponsored by the Victorian Blind Cricket Associationand we appreciate the VBCA's support as we bring in a new dawn in blind cricket podcasting.To Get In Touch with Noisy Balls: Shoot us an email to feedback@noisyballs.com and we will always respond and read your messages up on an upcoming show. Why not be a part of the conversation on the Noisy Balls Facebook Group and you can always follow us on the Noisy Balls Twitter Feed, where we will regularly update you with the goings on in blind cricket locally, nationally and internationally. To find out more about my other podcasting endeavours, I invite you to check out the Blind Tech Guys.  Support the show (https://pod.fan/noisyballs)★ Support this podcast ★

EPISODE OVERVIEW: So what happens when a traveling carnival family has a son and the doctors tell them that the boy has a rare form of the eye disease Retinitis Pigmentosa (RP) and will surely be blind?  Welcome to the Maxwell Ivey Story!In this episode of the Remarkable People Podcast, Max Ivey (Author, Speaker, Coach, Entrepreneur, podcast host, and more) shares with us his remarkable story of not only learning to adapt to the disease, but how he finished college, got a "real job" with the IRS, found out what he really wanted in life (not a "day job"), how he explored new and challenging opportunities, failed his way to success, and how he continues to adapt and overcome whatever life throws at him to this day.Listen now to hear more about Max's positive mindset, winning attitude, and how we can all choose the either make excuses or results!FEATURED QUOTE:"He that is good for making excuses is seldom good for anything else." - Benjamin FranklinEPISODE PROUDLY SPONSORED BY: • Pam Heinold, Better Homes and Gardens Real Estate – Pensacola, FloridaSHOW NOTES, LINKS, SPECIAL OFFERS, & RESOURCES MENTIONED:SPECIAL OFFER: Max is offering our Remarkable listeners a Free 13 segment audio course on how to become a rockstar podcaster: http://theblindblogger.net/8weeksEngage with our Remarkable Facebook Community and connect with other Remarkable People like You!

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.

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.

“The only thing worse than being blind is having sight but no vision.” Helen Keller When was the last time you planned where you wanted to go in life? I mean really plan it. What age do you want to retire? What car do you want to drive in ten years? How about the job you want to work for the rest of your life? If we don't paint a picture of the life we want to live, someone else is sure to do it for us. Often times that image isn't what we really want. Sometimes, we have a vision for where we want to go in life but the universe has other plans. On occasion, we find ourselves having to change our plans or adjust to a new life. It's especially hard when we don't see that change coming. What if you spent most of your life knowing something was wrong but couldn't find the validation or proof to back it up? How would you feel if people around you were constantly placing labels and blame on the outcomes that were simply beyond your control? For most of us, we wouldn't be able to handle it well. Fortunately my guest today isn't most of us. Kenneth E. Hughes is a local, natural-born comedian in the Greenville area who began developing his craft at an early age. Coming from a large family with southern roots, family gatherings automatically became Kenneth's first stage. In his early 20s, Kenneth’s life changed when he was diagnosed with Retinitis Pigmentosa (RP), a hereditary disorder causing gradual and progressive blindness. By his 30s, Kenneth lost the majority of his vision and was forced to leave a job he loved. Not knowing what life had in store for him, Kenneth soon found his own niche among the comedy scene. Being black, blind and gay, he is proud to wield the title of a “Triple Minority”. He is also self-proclaimed as the world’s first blind sex symbol, to which many whole-heartedly agree when personally asked by him. In 2017, Kenneth founded 20/20 Productions and has been producing his own shows featuring the talents of many comedians from the Upstate and Southeast region. In addition to managing his production company, he is also proud to work for Able South Carolina as an Independent Living Specialist offering peer support to others in the disabled community. Be sure to connect with Kenneth below: Facebook: https://www.facebook.com/2020-Productions-148499099202719/?eid=ARAYgceVRnSvq7Z-kZ8WFmfh0d_PBKtNrjdWUdYCi22t_g76kNW8N3Zx5sHz8UG-mvDZTq_CPle7AOO1&timeline_context_item_type=intro_card_work&timeline_context_item_source=1415112716&fref=tag Instagram: https://www.instagram.com/2020productionssc/ As always, share with a friend and subscribe if you enjoyed this episode. Comments and ratings are greatly appreciated and help us grow and improve the podcast. I hope you enjoy this episode of "No Rain... No Rainbows." #LetsGrow

Victor Mifsud joins the show to discuss his battle with retinitis pigmentosa, his documentary "My Neuroplastic Adventure", and a forthcoming experiment with peptides designed to improve his vision. Highlights[1:32] What is Retinitis Pigmentosa (RP)?[4:20] How did Victor decide to beat RP?[6:06] Backing away from substance and living on offense[11:29] Improving eyesight through biohacking[14:55] PeptidesResourcesMy Neuroplastic Adventure Documentary website Scattered Minds by Gabor MateThe Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science by Dr. Norman DoidgeProtect Your Eyes from Technology with Daniel GeorgievIris Computer SoftwareIt Didn't Start with You: How Inherited Family Trauma Shapes Who We Are and How to End the Cycle by Mark WolynnThe International Peptide SocietyTake Off Your Glasses and See: A Mind/Body Approach to Expanding Your Eyesight and Insight SponsorNeurohacker Collective specializes in the comprehensive formulas possible for needs like better mental performance, slowing the aging process, and increasing energy.Their founder Jordan Greenhall is a well respected public intellectual who has been on the show to discuss ways to increase human sovereignty, and their medical director Dr. Daniel Stickler has also been on the show and is one of the foremost experts in the world in the field of integrative medicine.They make the product Qualia Mind which can create astonishing improvements in focus, mental energy and emotional willpower, with the more affordable Qualia Focus being almost as good at half the cost.They also just debuted a product called Eternus, the most comprehensive anti-aging formula on the market, and are approaching backorder status for this revolutionary formula with dozens of ingredients and anti-aging properties.Go to neurohacker.com and entered discount code BOOMER at checkout for 15% off any purchase of Neurohacker products. Their products are the real deal for thinking clearer, improving energy, and staying in your physical prime for as long as possible.DisclaimerThis information is being provided to you for educational and informational purposes only. This is being provided as a self-help tool to help you understand your genetics, biodata and other information to enhance your performance. It is not medical or psychological advice. Virtuosity LLC, or Decoding Superhuman, is not a doctor. Virtuosity LLC is not treating, preventing, healing, or diagnosing disease. This information is to be used at your own risk based on your own judgment. For the full Disclaimer, please go to (Decodingsuperhuman.com/disclaimer). See acast.com/privacy for privacy and opt-out information.

In this episode, Brett Dupree discusses the thoughts that spawned from seeing Deepak Chopra live. Then he has a wonderful interview with Amy Bovaird, who talks about how she uses humor to help people cope with their hearing and vision loss. Amy Bovaird grew up in northwest Pennsylvania. In 1982, she received her bachelor’s degree with a double major in English Literature and Teaching English as Foreign Language (TEFL) from Oklahoma Christian University. 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 with honors from Cambridge University in England. 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. 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. She is currently undergoing genetic testing to discover the cause of her hearing loss. 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 now under the auspices of the American Printing House. 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. In the rest of her time, she fights to stay on track with her writing, finding time to go to the gym or run outdoors, and bemoaning she is at the beck and call of her bossy cat. https://amybovaird.comMore episodes at: Pod.JoyousExpansion.com

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.

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/. 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 3, 2018), Best-Selling Author, Win C welcomes Maxwell Ivey. Born into a family of carnival owners in Texas, USA, Maxwell Ivey was diagnosed with Retinitis Pigmentosa (RP) and started losing his sight at age 12. Having a natural gusto for life, Max became heavily involved in the Scouts, achieving the rank of Eagle Scout. By the time he graduated from college, he was completely blind. He also worked in the family business alongside his brothers until his father succumbed to lung cancer. Faced with his own mortality, Max made some life-altering changes. He underwent gastric surgery and lost over 250 pounds. He started his own business, buying and selling amusement rides, and learned how to blog using software for visually-impaired people. Overcoming many obstacles, Max made a name for himself online and now shares his experiences on The Blind Blogger. Max’s favourite things entail teaching and helping others achieve their goals and so he began another business: personal coaching. With the companionship of his crazy dog, Penny, Max now spends his days singing, reading, blogging, working, writing, creating videos, and coaching. Max would like to travel the world one day and meet his many online friends and clients in person. He’d also like to meet a special lady to share his life with. Maxwell Ivey can be found on social media, too, so please connect with him on: 1: Facebook 2: Google Plus 3: LinkedIn 4: Twitter 5: The Midway Marketplace 6: The Blind Blogger Be sure to pick up a copy of Max’s book Leading You Out of the Darkness into the Light for additional motivation! To learn more about Maxwell visit www.theblindblogger.net. 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 boo

A Cane Called Wanda is the latest episode from the Stories of You podcast series produced and presented by Glen Morrow. Kitty Barry shares her honest and uplifting reflections of motherhood (she has twin girls), her achievements, which includes writing a children's book, and very raw experiences of life as a person with Retinitis Pigmentosa (RP).

Kitty Barry shares her honest and uplifting reflections of motherhood (she has twin girls), her achievements and very raw experiences of life as a person with Retinitis Pigmentosa (RP). She chats about the book she's written - which is leaving a legacy for her twin girls.  Hope you enjoy this edition of the Stories Of You Podcast.   

We all know that there is a constant push-pull between doing what’s safe and predictable and getting out of our comfort zone and turning our businesses and our lives into an adventure. But, how do you get out of your own way? I mean there are a lot of very good reasons to stay comfortable and simply accept your lot in life… right? Well, our guest today might heavily disagree! Our guest on this episode is…Lowell Taylor. Lowell was the first visually impaired contestant in Amazing Race history where he completed alongside his wife, Julie. Lowell and Julie are an enthusiastic and dynamic couple who persevere through obstacles every day. Lowell suffers from Retinitis Pigmentosa (RP) and is legally blind. He has no peripheral vision, reduced central vision, and no vision in low light. Lowell has adjusted to decreasing sight his entire life, and has found passion in sports. He is currently training for Para-Triathlon and Para-Cycling (road and track) events with a dream to compete in the Tokyo Paralympic Games in 2020. His Paralympic dream is just one way his inspiring optimism, humour, and determination have turned tough times into positive experiences. Lowell is a Registered Psychologist working for Canada’s first and largest province wide, fully-integrated health system. He was hand-picked by management as an emerging leader early in his career . Lowell and Julie’s latest adventure has taken them into the world of - motivational speaking, where from the stage they share their messages of turning obstacles into opportunities. They prove that positivity can outshine a disability – that negativity can be more debilitating than a disability. to Find out more about Lowell: http://livewithheart.ca To find out more about hiring the host as a speaker or consultant: http://FullMontyLeadership.comTo find out more about hiring Dov Baron as a speaker or strategist for your organization: http://fullmontyleadership.com/consulting or http://fullmontyleadership.com/speakingRemember you can now also find us on iTunes, Spotify, iHeart Radio, or wherever you tune into podcastsAnd on traditional radio stations across the US every Monday and Thursday on: 99.5 FM & 1520 AM Las Vegas102.1 FM & 1640 AM Lancaster, Philadelphia87.9 FM & 810 AM Macon, Gorgia 92.1 FM & 1630 AM Tampa, Florida97.7 The Villages, Florida96.3 FM Boulder ,Colorado90.3 FM Milwaukee, Wisconsin 94.7 FM Pittsburg, Philadelphia87.9 FM Colorado Springs, ColoradoAlso look for us on ROKU TV where there’s 100K subscribers. If you are a regular listener, then a big thank you to you for making us the #1 podcast Globally for Fortune 500 listeners! And with a potential reach of 2.5 to 3 million listeners for every show, we’re honoured and grateful to be cited in INC.com as The #1 Podcast To Make You a Better Leader. See acast.com/privacy for privacy and opt-out information.

Blind Abilities presents their Canadian correspondent, Nick D’Ambrosio as he interviews Joshua Simmonds. Josh is a Psychologist, a Dragon boat racer and a “wise” man with plenty to share about his childhood with Retinitis Pigmentosa (RP), his education and his work as a psychologist in Montreal. February is RP   Awareness Month, so who better to feature on Blind Abilities than Josh who has managed and excelled with RP for his entire life. Check out the RP Family Facebook Group to which Nick refers.   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.

Bellus Health is left reeling as its lead drug Kiacta fails its Phase 3 clinical study, Vancouver based QLT inks a merger deal with Aegerion Pharmaceuticals and looks to a fresh new start, and Biotechnology Focus relaunches its Hot Button Issue Survey. We have this and more on this weeks show! Show Notes: We kick things off this week with some bad news on both the business and the clinical trial front with BELLUS Health the rare disease drug development firm reporting top line results from its Phase 3 study of KIACTA™ (eprodisate) as a treatment of AA amyloidosis. The disease is characterized by secondary to severe chronic inflammation or infection leading to the formation and deposition of amyloid fibrils in organs, often resulting in end-stage renal disease and death. Currently there are no therapies available that target the disease directly. According to company CEO Roberto Bellini, KIACTA™ failed to meet its primary efficacy endpoint in slowing renal function decline. The news, announced on June 20, was somewhat surprising to both the company and its investors. Shares for the company on the TSE under the trade symbol BLU plummeted, going from $2.42 on June 17, to around $0.39 on the day of the announcement, holding at .40 cents today. Many investors had rallied to the company over the past year due to the drug being in later stages of clinical trial development. Moreover, the science seemed sound as in earlier studies, KIACTA™ was shown to significantly delay the disease.  In both earlier studies and even in the failed trial, it was found to be safe and well tolerated over treatment periods of greater than four years. The confirmatory Phase 3 study of KIACTA™ was a global study across more than 70 sites in more than 25 countries that randomized 261 patients to receive either 800mg dose of KIACTA™ twice daily or placebo. The  study was an event driven study that lasted five years meeting its completion target of 120 patient events linked to the deterioration of kidney function in January 2016. The company added that further analysis of the data is ongoing, and a more detailed data set of the KIACTA™ Phase 3 study will be presented July 6 at the XV International Symposium . Roberto Bellini, president and CEO of the company adds that while Bellus is disappointed that the Phase 3 study did not meet the primary efficacy endpoint, the full data set will be assessed to determine the best path forward. The company says in the aftermath of the failed trial, it will continue working on a number of other projects in its portfolio,  including its study of KIACTA™ as a treatment for sarcoidosis (set to enter Phase 2 trials), clinical development of Shigamab™ as a treatment for STEC-related Hemolytic Uremic Syndrome (sHUS), and the company’s research-stage project for AL amyloidosis. We go from negative news to the more positive, as QLT Inc., once upon a time Canada’s hottest biotech company, and a company long-entrenched as a in the BC- biotech community inking a strategic merger agreement with Cambridge-based Aegerion Pharmaceuticals, Inc. The proposed deal has been approved by the board of directors of both companies, and is expected to close late in the third quarter or during the fourth quarter of 2016. Upon closing, QLT says it plans to change its name to Novelion Therapeutics Inc. adding that its common shares will trade on the NASDAQ Global Select Market and the Toronto Stock Exchange. QLT’s current market cap is approximately $110 million (CDN) and Aegerion has a market cap of approximately $70 million (CDN) giving the new combined company a market value of approximately $180 million. This isn’t QLT’s first attempt to merge with another company, having been thwarted in the past in prior merger arrangements with Endo International, Auxilium Pharmaceuticals and InSite Vision. The planned merger with Endo International was terminated in October 2014, and likewise, Auxilium had also been carrying out plans to merge with QLT but chose instead to be bought by the aforementioned Endo International in a separate deal valued at $2.6 billion. Likewise, last year, QLT and InSite announced a merger, but that deal fell through after InSite changed its mind and accepted a higher merger offer from Sun Pharmaceutical Industries. This time QLT won’t be left at the alter so to speak, and likewise both companies under the Novelion Therapeutics Inc. banner will get a much needed rebrand and fresh start. The new company will also have quite a diversified portfolio consisting of Aegerion’s two commercially branded products, Juxtapid® (lomitapide) capsules and Myalept® (metreleptin), and QLT’s QLT091001 (Zuretinol Acetate or Zuretinol), a Phase 3-ready Ultra-Orphan Fast Track and Orphan Drug designated asset being developed for the treatment of Inherited Retinal Disease caused by underlying mutations in RPE65 or LRAT genes (IRD), which indication comprises Leber Congenital Amaurosis (LCA) and Retinitis Pigmentosa (RP). Aegerion’s CEO, Mary Szela, will serve as CEO of Novelion following the close of the transaction. Additionally, an investor syndicate comprised of both new investors and existing shareholders of both companies has  committed to invest via a private placement approximately $22 million in QLT. The investment will be funded prior to the transaction close and is expected to provide Novelion with additional capital to support future operations and the potential opportunity for targeted business development initiatives. In futher business news, TVM Life Science Ventures VII a venture capital fund domiciled in Montréal, Québec, has closed the fund’s eleventh investment, establishing Mediti Pharma Inc., a company based in Montréal, Québec. The new company is developing a Phase 2 ready compound, MP-101, originally discovered by Eli Lilly and Company for the treatment of Alzheimer’s disease (AD) psychosis. The behavioral symptoms associated with AD psychosis, include hallucinations, delusions and aggression. The company is managed by CEO Dr. Ivan Shaw, formerly with Merck Frosst, Aptalis and Actavis and neurobiologist and experienced drug developer and CFO Mark Cipriano, a Boston-based highly experienced and networked executive. As for the fund itself, and its initial association with the drug, it comes about as part of a unique arrangement between TVM Capital Life Science and numerous limited partners, which includes Eli Lilly and Company.  The goal of the fund is to finance and access innovation while managing risk and sharing reward. Staying in Montreal, on the clinical trial front Montreal InVivo , the city’s economic development organization with a focus on life sciences and health technologies (LSHT) sector. is partnering with Canadian Clinical Trails Coordinating Centre(CCTCC) to enhance Canada's clinical research capabilities. The partnership will result in the addition of Quebec clinical trial investigators "data from Montreal Goes Clinic to the Canadian ClinicalTrials Asset Map (CCTAM) and real-time updates down the line. The Montreal Goes Clinic itself is an initiative by Greater Montreal's life sciences"; cluster that aims to make the region a world-class centre of expertise in early stage clinical trials.  The goal of this initiative is to improve Greater Montreal's business environment by helping pharmaceutical, biotech, contract research organizations (CRO's) and medical device companies perform high quality clinical trials and run clinical proofs-of- concept, thus  increasing patient access to new treatments and improving medical practices by allowing clinicians to work with technologies of tomorrow and the best equipment. Frank Béraud, CEO of Montréal InVivo adds that the portal will create more visibility for Quebec's researchers and investigators throughout Canada, and will also showcase the province's capabilities in clinical research. Dr. Shurjeel Choudhri, senior vice president and head, Medical and Scientific Affairs Bayer Inc. and the current Chair of the CCTCC Executive Committee adds that the CCTAM is a great example of the collaboration of multiple stakeholders from across Canada, including representatives from the Federal and Provincial governments, industry, the Canadian Institutes of Health Research and HealthCareCAN. He calls the addition of clinical investigator data from Montreal Goes Clinic an important step towards making the CCTAM a truly comprehensive inventory of Canada's clinical research assets. If you could have a face-to- face conversation with government to discuss the life science industry, both the good and the bad what would you say? A number of years ago Biotechnology Focus used to run a special Hot Button Issue survey which gave our readers the opportunity to engage with government to get their concerns before the right people and have their voices heard. Well, with the Justin Trudeau government coming up to its ninth month in office, we thought the timing was right to do it all again. The survey kicked off yesterday and will run to July 15, 2016. Similar to our past “Hot Button” issue surveys, we want your feedback on such things as regulatory policy including reimbursement of new technologies, funding challenges, intellectual property protection, the state of the industry and much more. This survey is open to everyone in the industry, from the business sector, to research institutions, and at all levels, essentially, if your field is biotech, bioscience or life science in general we want to hear from you. This already is vibrant industry, with strong representation at major research and knowledge translation institutions, a large base of Canadian biotech SMEs and MMEs, and we’re home to many of the world's largest and leading pharmaceutical companies. Moreover, the timing for this survey couldn’t be better as the Federal government as mentioned in last week’s podcast has just launched the “Innovation Agenda”, an action plan to both redesign and redefine how we as a nation support innovation and growth. They have embarked on this Innovation Agenda in partnership and coordination with the private sector; provinces, territories and municipalities; universities and colleges; and the not for-profit sector and they have also already taken the first steps in this plan already with Budget 2016, providing support for health research, genomics, regenerative medicine, brain research and drug development and committed $800 million to support innovation networks and clusters. So there’s obviously lots that government is doing right to make Canada a friendly environment for our industry, but can we do more? Canada’s Minister of Innovation, Science and Economic Development Navdeep Bains has asked us all to step up and voice our opinions, to help further shape the future of Canada’s knowledge based economy. And our Hot Button Issue survey is your chance to do that! Your answers will be featured in a special high profile issue that will be poly-bagged with our sister publication Canadian Government Executive magazine and sent to Deputy Ministers, Assistant Deputy Ministers, Cabinet, Directors and Generals, working in Health Canada, Industry Canada, Agriculture & Agri-Food, Foreign Affairs & Internationals trade, the Privy Council as well as other public sector executives in federal and provincial departments. So here is your chance to help influence the Innovation Agenda. And remember, by taking only a couple of minutes to complete our survey, you’re helping us grow Canada’s knowledge-based economy, one answer at a time. You can access the survey by clicking the link below this podcast. That wraps up this weeks show, you can find us online at www.biotechnologyfocus.ca. Likewise, we’re always looking for feedback, story ideas and suggestions so we’d love to hear from you. Simply reach out to us on twitter: @BiotechFocus , email at biotechnology_focus@promotive.net For all of us here at Biotechnology Focus, thank you for listening.

This week  on Talking Vision, Andrew Follows has a great passion for photography. Andrew has exhibited his work both here in Australia and overseas. He also has Retinitis Pigmentosa (RP).  Thanks to Digital photography however, and his Guide Dog Eamon, Andrew has been able to continue to  develop his passion in surprising and innovative ways.   Also on the program, Stella speaks with Research Fellow at the Centre for Eye Research Australia and clinical psychologist, Bonnie Sturrock about pilot of an acceptance-based guided self-help program to prevent and reduce depression in people who are blind or have low vision.