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23 episodes with Stargardt disease
6 episodes with Stargardt disease
2 episodes with Stargardt disease
2 episodes with Stargardt disease
The charity Retina UK are seeking feedback from people with inherited sight loss conditions to learn how they can best support this community and feed into medical research. The charity primarily supports people who are living with genetic conditions, often with a progressive decline in sight. Some of these conditions are well known, such as Retinitis Pigmentosa, Usher Syndrome and Stargardt Disease and others are more rare, such as Leber congenital amaurosis. To participate in Retina UK's Sight Loss Survey, you can call their Helpline: 01280 821334. Or you can complete the survey online: surveymonkey.com/r/SightLossSurvey2025. The link to the survey can also be found on the Retina UK website. The CSUN Assistive Technology Conference is an annual showcase of the latest developments in assistive technology. The BBC's Senior North America Correspondent, Gary O'Donoghue and Emma Tracey, presenter of the BBC's disability and mental health podcast Access All, were there and they provide In Touch with an overview of the latest bits of tech that piqued their interest.Presenter: Peter White Producer: Beth Hemmings Production Coordinator: Liz PooleWebsite image description: Peter White sits smiling in the centre of the image and he is wearing a dark green jumper. Above Peter's head is the BBC logo (three separate white squares house each of the three letters). Bottom centre and overlaying the image are the words "In Touch" and the Radio 4 logo (the word ‘radio' in a bold white font, with the number 4 inside of a white circle). The background is a bright mid-blue with two rectangles angled diagonally to the right. Both are behind Peter, one is a darker blue and the other is a lighter blue.
The company is also planning to conduct the clinical trial at sites in the EU.
Send us your feedbackFor this episode of the My Macular and Me podcast, we are revisiting one of talks from Dr Matteo Rizzi, research fellow at UCL Institute of Ophthalmology, as he speaks on Stargardt disease and how it affects vision, as well as the future of gene therapy.Dr Matteo Rizzi joined the My Macular and Me podcast with Dr Omar Mahroo earlier this year to discuss photopsia and photophobia in patients with Stargardt disease. If you would like to find out more on this topic, you can listen here.For more information on registration, please visit the Macular Society website. Or if you have any questions, please get in touch at help@macularsociety.orgThe Macular Society has been supporting people with macular conditions for over 30 years. The right information and support can help people overcome their worries and retain their independence. We provide free information and support to those with macular disease, along with their family and friends. If you or a family member need advice or support, please make sure to reach out. No one has to face macular disease alone. Please call us on 0300 3030 111.
The company has also launched a natural history study of patients to inform the planned clinical trial.
Purdue University grad Mike Luepke has been in the fitness industry for nearly 20 years and runs a gym called Valeo / Training with his wife, Jessica. Mike has also faced significant visual impairment after being diagnosed with Stargardt Disease. He and Brian talk about the importance of gratitude, even in the midst of significant challenges and limitations. Links & Episode Notes Mike LuepkeHot Ones - YouTube Valeo / Training What Is Stargardt Disease? - American Academy of Ophthalmology Kellogg Eye Center Michael Luepke | The University of Iowa Institute for Vision Research Rick Warren Vision - Accessibility - Apple GDK Construction Made to Advance is a production of Engedi Church and is hosted by Brian Aulick.
Drs. Avni Finn and Sarwar Zahid join the podcast to preview the November 2024 edition of Retinal Physician, found online at http://www.retinalphysician.com.Relevant Financial Disclosures: NoneYou can claim CME credits for prior episodes via the AAO website. Visit https://www.aao.org/browse-multimedia?filter=Audi
Join us for an in-depth discussion on Stargardt disease, a rare inherited form of juvenile macular degeneration that affects about 1 in 10,000 children and young adults. Learn about the latest in diagnosis, genetic testing, and promising treatments, which researchers are also evaluating in geographic atrophy.
The Phase 3 trial is expected to begin in Q1 2025.
Stargardt Disease and Age Related Macular Degeneration. Speakers: Thomas Wubben, MD, PhD; Jason Miller, MD, PhD and Esther Biswas-Fiss, PhD This session will feature clinicans and researchers discussing recent updates for Stargardt disease and age-related macular degeneration.
Send us your feedbackIn this episode of the My Macular and Me podcast, Elena Piotter, a PhD student at the University of Oxford, discusses her research project into a gene editing technique called CRISPR and how it could lead to a treatment for Stargardt disease. Her research is co-funded by the Macular Society and Retina UK.The Macular Society has been supporting people with macular conditions for over 30 years. The right information and support can help people overcome their worries and retain their independence. We provide free information and support to those with macular disease, along with their family and friends. If you or a family member need advice or support, please make sure to reach out. No one has to face macular disease alone. Please call us on 0300 3030 111.
In the latest episode of New Insight with Veeral Sheth, MD, host Veeral Sheth, MD, director of clinical research at University Retina, speaks with Seemi Khan, chief medical officer at Alkeus Pharmaceuticals, on the company's lead candidate being evaluated in clinical trials for the treatment of Stargardt disease and geographic atrophy (GA) secondary to age-related macular degeneration (AMD). Gildeuretinol is a novel molecule designed as a specialized form of deuterated vitamin A to reduce the dimerization of vitamin A without disrupting vision. The therapy has received Breakthrough and Orphan Drug designations from the US Food and Drug Administration (FDA). Listen to the conversation between experts on Khan's background in the pharmaceutical industry, including time spent at Abbott, Abbvie, and Quark Pharmaceuticals, her experience bringing treatments to patients with rare diseases, and the impressive data from gildeuretinol in the TEASE clinical trial program for a currently unmet need. Episode Highlights 0:07 Episode Intro 0:57 Seemi Khan's background 4:38 Mechanism of action of gildeuretinol 7:22 Patient populations 9:00 TEASE clinical trial program 14:37 Gildeuretinol in GA 16:32 Safety data 18:47 Next steps for Alkeus 22:28 Conclusion Check out more ophthalmology coverage at HCPLive.com!
Trigger warning: this episode includes discussion about pregnancy loss.On this weeks episode we meet Ashley's high-school bestfriend Mel. She openly talks about the challenges of being diagnosed with a disability at a young age and her motherhood journey so far. Get your tissues out for this one!
Professor David Keegan, board member Fighting Blindness, and Paul Boskind, Tony Award-winning Broadway producer, psychologist, entrepreneur, and LGBTQ activist.
The company's innovative Gene Coding™ platform enables seamless insertion of DNA into selective genomic locations.
ACDN-01 is the only genetic medicine entering clinical development for Stargardt disease.
Eavan O'Neill started running at 21 years old when she was diagnosed with Stargardt Disease, a rare degenerative disorder that leads to visual impairment and blindness. Although there is currently no cure and she can't slow the progression of her symptoms, Eavan leans into running as an incredible source of joy, and a powerful way to connect with the running community. Connect with Eavan: Instagram Episode sponsor:Shop Teva
This week we're chatting to the lovely Rosalie Dias who we met on a Torch holiday! Rosalie shares her experiences with having Stargardt Disease, being a Christian, and having a passion for poetry...
In this insightful episode of Eyeway Conversations, George Abraham engages in an inspiring dialogue with Milton Lance, an entrepreneur hailing from Bangalore, driven by a profound passion for music and entrepreneurship. Milton's journey as the Founder and Director of The Music School Bangalore, a premier music institution in India, is a tale of unwavering determination. Though uncertain of his entrepreneurial path initially, his profound love for music and formal training in drums during college sparked a vision. Graduating from St. Aloysius College, Mangalore, he embarked on a transformative journey. Armed with formal music training, including drum studies in college and UK board examinations from 2008 to 2010 with Fraternity, UK, Milton honed his skills through YouTube videos and DVD lessons. As a visually impaired individual battling Stargardt Disease, with significant central vision loss but a resilient spirit, Milton joined Baldwin High School as a music teacher. His practice sessions during lunchtime caught the attention of students, resulting in a viral video on Facebook. This unexpected publicity led to an influx of inquiries and offers to teach drums, compelling Milton to initiate one-on one sessions in a small room with an electric drum set. From this modest beginning as the Drum School Bangalore, Milton's venture expanded gradually. Collaborating with friends skilled in other musical instruments, he transformed the school into The Music School Bangalore. The institution's growth was remarkable, offering full-time programs ranging from level 3 extended programs to level 5 second-year bachelor's degrees and gaining accreditation from the UK for vocational qualifications. Additionally, the school facilitates training and credit transfer programs with international universities. Milton is launching TMSB Records, set to showcase original works on their YouTube channel with student and artist compositions. He adeptly utilizes magnification technology, finding solace in its support since discovering his eye condition in second grade. His path intertwined with his future wife's during martial arts sessions in 8th grade, where their shared passion for karate blossomed into a lasting relationship that culminated in marriage. United not only by their martial arts journey but also by a fervent love for swimming and sailing, they share an unbreakable bond forged through their mutual aquatic pursuits. Join us to discover Milton's remarkable journey, from overcoming challenges with Stargardt Disease to his passion for music education and a unique love story rooted in martial arts. To access the podcast transcript, click on the link: https://otter.ai/u/j87nbQUryL2XSUgLbu44WPDzMUU?utm_source=copy_url This podcast episode is brought to you by Score Foundation. To support our work, kindly visit the link: https://scorefoundation.org.in/
In the second hour of "Connections with Evan Dawson" on Tuesday, November 7, 2023, News 8's Adam Chodak shares his story of living with Stargardt disease, a rare eye condition that leads to blindness.
Link to bioRxiv paper: http://biorxiv.org/cgi/content/short/2023.04.17.535579v1?rss=1 Authors: Muller, A., Sullivan, J., Schwarzer, W., Wang, M., Park-Windhol, C., Klingler, B., Matsell, J., Hostettler, S., Galliker, P., Duman, M., Hou, Y., Balmer, P., Virag, T., Barrera, L. A., Xu, Q., Magda, D. P., Kilin, F., Khadka, A., Quinodoz, M., Hasler, P. W., Moreau, P.-H., Fellmann, L., Azoulay, T., Cattaneo, M., Picelli, S., Grison, A., Cowan, C. S., Janeschitz-Kriegl, L., Kusnyerik, A., Renner, M., Nagy, Z. Z., Szabo, A., Rivolta, C., Scholl, H. P. N., Bryson, D., Ciaramella, G., Roska, B., György, B. Abstract: Stargardt disease is a currently untreatable, inherited neurodegenerative disease that leads to macular degeneration and blindness due to loss-of-function mutations in the ABCA4 gene. We have designed a dual adeno-associated viral vector split-intein adenine base-editing strategy to correct the most common mutation in ABCA4 (c.5882G greater than A, p.G1961E). We optimized ABCA4 base editing in human models, including retinal organoids, iPSC-derived retinal pigment epithelial cells (RPE), as well as adult human retinal- and RPE/choroid explants in vitro. The resulting gene therapy vectors achieved high levels of gene correction in mutation-carrying mice and in non-human primates, with an average editing of 37% of photoreceptors and 73% of RPE cells in vivo. The high editing rates in primates make way for precise and efficient gene editing in other neurodegenerative ocular diseases. Copy rights belong to original authors. Visit the link for more info Podcast created by Paper Player, LLC
In this episode of the My Macular and Me podcast we are joined by Professor Andrew Lotery of the University of Southampton. He speaks to the Macular Society about the latest news regarding research into Stargardt disease.The Macular Society has been supporting people with macular conditions for over 30 years. The right information and support can help people overcome their worries and retain their independence. We provide free information and support to those with macular disease, along with their family and friends. If you or a family member need advice or support, please make sure to reach out. No one has to face macular disease alone. Please call us on 0300 3030 111.
The company's drug is designed to reduce accumulation of toxins that cause vision loss.
Stargardt Disease is a rare genetic eye disease that happens when fatty material builds up on the macula, the small part of the retina - which is needed for sharp, central vision. Vision loss usually starts in childhood, but some people don't start to lose their vision until they are adults (Stargardt Disease | National Eye Institute (nih.gov) Today you will hear one family's journey into discovering their son, Gabriel, has Stargardt Disease. Gabriel's Mom, Melissa Weathers, does a beautiful job walking us through a two-year timeline, trying to figure out what was happening with Gabriel's vision. Melissa also highlights some of the amazing people and resources they've been introduced to through the past several years, as well as shares her experience transitioning Gabriel to public school and establishing an IEP with his new school. Resources Mentioned: Two Blind Brothers (https://twoblindbrothers.com/) New View Oklahoma (https://nvoklahoma.org/) OWL (Oklahomans Without Limits) Camp: (https://nvoklahoma.org/community-programs/owl-camps) Foundation Fighting Blindness (https://www.fightingblindness.org/chapters) Oklahoma Parents Center (https://www.okdrs.gov/guide/oklahoma-parents-center) Bookshare (https://www.bookshare.org/cms/) Dean McGee Eye Institute Pediatric Ophthalmology (https://dmei.org/services-specialties/pediatric-ophthalmology-strabismus/) Dr. Michael Siatkowski (https://dmei.org/providers/r-michael-siatkowski/) #Stargardt #ChildrensEyeHealth #OWLCamp #TwoBlindBrothers #NewViewOklahoma #FoundationFightingBlindness #OPC #OklahomaParentsCenter #ChildhoodMacularDegeneration #CCTVMagnifier #IEP #VisualImpairment
Alkeus Pharmaceuticals reported that its emerging treatment for Stargardt disease slowed the growth of retinal atrophy – i.e., the area of damage to the retina – by approximately 30 percent per year for patients in its Phase 2 TEASE clinical trial at seven clinical research centers in the US.
Painter, Arnold Plasencia, says that when you love something, you will find a way. In Episode 29 of the Bold Artist Podcast, Arnold speaks about the joy painting brings him and his desire to never lose that feeling. He says we all deserve to do what we love. He also is an artist who is experiencing macular degeneration as a result of living with Stargardt Disease. Be inspired by Arnold on this week's episode of the Bold Artist Podcast. Some highlights of this episode include Arnold sharing how: He is walking through his diagnosis of Stargardt Disease He sets up his workspace to assist his painting Other artists' stories offer hope Changing how he did things as a painter was transformative Love finds a way Find more about our guest artist, Arnold Plasencia, and our hosts, Marijanel and Charla, on their websites and Instagram, and be sure to check out Bold School and the online courses offered inside this world-changing community. WEBSITES: https://www.charla.ca/ https://marijanel.com/ https://www.boldschool.com/ INSTAGRAM: @arnoldplasencia @thevisuallyimpairedartist @boldartistpodcast @boldschoolinc @charla.maarschalk.art @marijanel ..... Licensed Epidemic Music: ES_Emelie by Mondays
The Party are: Dietrich Neumann, Human Gold Wizard Ekaterina Hergen-Hultz, Human Priestess of Rhya Fisk Søggard, Human River Warden Lars Ulrich, Human Soldier This episode is a recap to bridge between Episode 8 & Episode 10. This campaign follows the Enemy Within Adventure Book series created for Warhammer Fantasy Roleplay 4th Edition, by Cubicle 7. The following books were used to prepare this campaign: Warhammer Fantasy Roleplay Core Rulebook Enemy In Shadows Enemy In Shadows Companion Death on the Reik Death on the Reik Companion Middenheim: City of the White Wolf Rough Nights & Hard Days A Guide to Ubersreik Ubersreik Adventures 1 One Shots of the Empire Archives of the Empire Volume 1, Altdorf Crown of the Empire About Game Master Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email: KnightsOfTheBraille@Gmail.com Twitter: @BrailleKnight
The final episode of the Understanding Voices mini-series with me, Ella Mansfield. In this episode, I talk to Bambi French, a SENDCo, coach and podcaster who takes an activist stance in changing the lives of people with visual impairments, something that she has personal experience of. Bambi and I discuss the story of her visual impairment and how she has come to want to help people who are newly diagnosed. We discuss how diagnosis has an impact on identity and how her experiences have influenced her practice as a SENDCo. Finally, we talk about how EPs can work inclusively with schools and find a role in supporting young people with visual impairments.Bambi French - BioBambi French is wife, mum of one and special needs teacher to many! When she was 15 years old, Bambi was diagnosed with a degenerative eye condition called Stargardt Disease. Over the years, her level of vision has deteriorated and even though the challenges of sight loss have on many occasions caused her to want to give up, with determination and support from those closest to her she has been able to achieve more than she ever thought would be possible.Over the last 25 years, her personal and professional experience has taught her that it is possible to live this life well, in spite of the limitations we might be facing. But she also recognises and understands that there are still so many who need the support and encouragement that will help them believe this for themselves.In response to this need, Bambi is building a coaching practice and is the host of The She is a VIP Podcast, where the central mission is to help visually impaired women and girls embrace all that they are, discover their purpose and make an impact in the lives of others.WEBSITEwww.sheisavip.comINSTAGRAMhttps://www.instagram.com/she_isavip/FACEBOOKhttps://www.facebook.com/sheisavip1Support the show (https://www.ko-fi.com/agentsofhope)
In Episode 29, two-time Paralympian Mac Marcoux and his current guide, Tristan Rodgers, joined me to talk about the Winter Paralympic Games, Para-Alpine skiing with Team Canada, and what it means to be diagnosed with Stargardt Disease. This is Part 1 of a two-part series with Mac and Tristan! Listen in next week to hear them work through a pre-race morning and all the offseason work required to spend your life professionally skiing. Closer Mentality: UNCENSORED: https://www.youtube.com/channel/UCJuZfwIP9ny-WIqpcUaQnWA Mac Marcoux's Instagram: @macmarcoux Tristan Rodgers' Instagram: @tristanr0dgers
This week Richard & Jim are joined by Phile (AKA MostlyBlindGamer) who tells computers when to spit fire for a living. When not working, expect a gaming PC to be on or ruckus laughter during the latest session of a tabletop RPG. Follow Phil on Twitter Knights of the Braille are groups of blind and visually impaired table top roleplaying game enthusiasts. We bring together people with low vision, partially sighted, no functional vision and even those who are fully sighted to enjoy games together. We provide community, access to games and materials. Facebook Twitter website About Richard A senior in High School, set to graduate in a few months, in a nearly fatal car wreck on the Thanksgiving holiday of 2000. After losing his sight in the wreck, Richard shares his story in hopes of helping others with a tragic story of their own, giving hope to those who may have gone through a similar situation. Now a Game Master for Knights of the Braille, he brings some time enjoyment to those unfortunate enough to be in his groups. Email Richard Follow Richard on Twitter Join Richard on Facebook About Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email Jim Follow Jim on Twitter
Brian Mech, CEO (bio) of eSight Corporation (a company producing electronic glasses which can restore vision) and Yvonne Felix (bio), Access and Community Development for eSight and an artist, join Marc Raco and Rob Sanchez at The 2016 Smithers Apex WEAR Conference in Boston, MA. Brian and Yvonne share how it works, what is possible, and what’s next; when to release, wearables for good and Jules Vern; Yvonne, Stargardt Disease, and discoveries; and the Mind’s eye, new data, and new experiences.. See omnystudio.com/listener for privacy information.
This week we are joined by Temple Smith, a visually impaired tabletop roleplaying game enthusiast and advocate. Follow Temple Smith on Twitter Knights of the Braille are groups of blind and visually impaired table top roleplaying game enthusiasts. We bring together people with low vision, partially sighted, no functional vision and even those who are fully sighted to enjoy games together. We provide community, access to games and materials. Facebook Twitter website About Richard A senior in High School, set to graduate in a few months, in a nearly fatal car wreck on the Thanksgiving holiday of 2000. After losing his sight in the wreck, Richard shares his story in hopes of helping others with a tragic story of their own, giving hope to those who may have gone through a similar situation. Now a Game Master for Knights of the Braille, he brings some time enjoyment to those unfortunate enough to be in his groups. Email Richard Follow Richard on Twitter Join Richard on Facebook About Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email Jim Follow Jim on Twitter
*SPONSOR*We are SO excited to announce that we have Official Sponsorship from a truly incredible company in Odin's Vault, a dedicated company who only provide the very best officially licensed Pop Culture Merchandise, from Funko Pops to T Shirts, DC Comics to Marvel, you want it? Then over RIGHT NOW to Odin's Vault - Website Below:https://odinsvault.co.uk/Welcome to Episode 73 of the Hip Hop Orchestra Presents PodcastIn this absolutely INCREDIBLE and inspirational Episode, we are introduced to the truly inspirational Blind Pianists and identical Twin Sisters Fabiana and Paula Chavez all the way from Beunos Aires Argentina Fabiana and Paula share with us how they got into music, the tragedy of losing their sight at only 13 through a rare disease known as Stargardt Disease, how they keep so updated about life, being nominated for Woman of the Year, gaining their Masters at Trinity and SO muchWe hope you enjoy :)Available for download on all major platforms - https://www.buzzsprout.com/826003/epi...Full Length Trackhttps://soundcloud.com/gsavvides/viol...The Chavez TwinsWebsite - https://www.chaveztwins.com/Instagram - @fabianaandpaula / @melody_accessFacebook - https://www.facebook.com/FabianaandPaulaChavezTwitter - @chaveztwins / @melody_access / @paulistarlightThe Hip Hop Orchestra:Website - https://thehiphoporchestra.co.uk/Instagram - @TheHipHopOrchestraTwitter - @TheHipHopOrchFacebook - The Hip Hop OrchestraGeorgio Savvides:Instagram - @georgiosavvidesFacebook - Georgio SavvidesTwitter - @GioSavvides Linkedin - https://www.linkedin.com/in/georgio-savvides-3414b668/Support the show (https://www.patreon.com/TheHipHopOrchesta?fan_landing=true)
This week we discuss play-by-post games. Knights of the Braille are groups of blind and visually impaired table top roleplaying game enthusiasts. We bring together people with low vision, partially sighted, no functional vision and even those who are fully sighted to enjoy games together. We provide community, access to games and materials. Facebook Twitter website About Richard A senior in High School, set to graduate in a few months, in a nearly fatal car wreck on the Thanksgiving holiday of 2000. After losing his sight in the wreck, Richard shares his story in hopes of helping others with a tragic story of their own, giving hope to those who may have gone through a similar situation. Now a Game Master for Knights of the Braille, he brings some time enjoyment to those unfortunate enough to be in his groups. Email Richard Follow Richard on Twitter Join Richard on Facebook About Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email Jim Follow Jim on Twitter
This week is a recap. Dietrich got to the College Foundry of the Gold Order, Fisk met his Uncle Josef and Jahn met two very strange men. The Party are: Astrid Johannes-Balken Von Strauss, Human Artisan turned Soldier Dietrich Neumann, Human Wizard Fisk Søggard, Human River Warden This campaign follows the Enemy Within Adventure Book series created for Warhammer Fantasy Roleplay 4th Edition, by Cubicle 7. The following books were used to prepare this campaign: Warhammer Fantasy Roleplay Core Rulebook Enemy In Shadows Enemy In Shadows Companion Death on the Reik Death on the Reik Companion Middenheim: City of the White Wolf Rough Nights & Hard Days A Guide to Ubersreik Ubersreik Adventures 1 One Shots of the Empire Archives of the Empire Volume 1, Altdorf Crown of the Empire About Game Master Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email: KnightsOfTheBraille@Gmail.com Twitter: @BrailleKnight
This week we discuss the Knights Wrestling Federation and the Orcam. Knights of the Braille are groups of blind and visually impaired table top roleplaying game enthusiasts. We bring together people with low vision, partially sighted, no functional vision and even those who are fully sighted to enjoy games together. We provide community, access to games and materials. Facebook Twitter website About Richard A senior in High School, set to graduate in a few months, in a nearly fatal car wreck on the Thanksgiving holiday of 2000. After losing his sight in the wreck, Richard shares his story in hopes of helping others with a tragic story of their own, giving hope to those who may have gone through a similar situation. Now a Game Master for Knights of the Braille, he brings some time enjoyment to those unfortunate enough to be in his groups. Email Richard Follow Richard on Twitter Join Richard on Facebook About Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email Jim Follow Jim on Twitter
This week we are joined by Dylan Fox, a sighted accessibility consultant and designer focusing on augmented and virtual reality. He is the Coordination and Engagement Team leader for the nonprofit XR Access, and does research at UC Berkeley on applications of augmented reality for people with visual impairments. He's also played Dungeons and Dragons for the last 10 years. Favorite class: wizard. Follow Dylan on Twitter Visit Dylan's website Knights of the Braille are groups of blind and visually impaired table top roleplaying game enthusiasts. We bring together people with low vision, partially sighted, no functional vision and even those who are fully sighted to enjoy games together. We provide community, access to games and materials. Facebook Twitter website About Richard A senior in High School, set to graduate in a few months, in a nearly fatal car wreck on the Thanksgiving holiday of 2000. After losing his sight in the wreck, Richard shares his story in hopes of helping others with a tragic story of their own, giving hope to those who may have gone through a similar situation. Now a Game Master for Knights of the Braille, he brings some time enjoyment to those unfortunate enough to be in his groups. Email Richard Follow Richard on Twitter Join Richard on Facebook About Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email Jim Follow Jim on Twitter
The Party are: Astrid Johannes-Balken Von Strauss, Human Artisan turned Soldier Dietrich Neumann, Human Wizard Fisk Søggard, Human River Warden This episode Astrid and Dietrich are offered money and favors to commit murder in the dead of night, will they do it? Find out! This campaign follows the Enemy Within Adventure Book series created for Warhammer Fantasy Roleplay 4th Edition, by Cubicle 7. The following books were used to prepare this campaign: Warhammer Fantasy Roleplay Core Rulebook Enemy In Shadows Enemy In Shadows Companion Death on the Reik Death on the Reik Companion Middenheim: City of the White Wolf Rough Nights & Hard Days A Guide to Ubersreik Ubersreik Adventures 1 One Shots of the Empire Archives of the Empire Volume 1, Altdorf Crown of the Empire About Game Master Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email: KnightsOfTheBraille@Gmail.com Twitter: @BrailleKnight
This week we are joined by Shawna Spain, an Accessibility Advocate. Shawna has Autism and an AutoImmune Disorder which has made her an Ambulatory Wheelchair User, and Shawna works with a Service Dog. Follow Shawn on Twitter Neruo Tribes was the book mentioned by Shawna. Game To Grow is the organization mentioned by Shawna. Knights of the Braille are groups of blind and visually impaired table top roleplaying game enthusiasts. We bring together people with low vision, partially sighted, no functional vision and even those who are fully sighted to enjoy games together. We provide community, access to games and materials. Facebook Twitter website About Richard A senior in High School, set to graduate in a few months, in a nearly fatal car wreck on the Thanksgiving holiday of 2000. After losing his sight in the wreck, Richard shares his story in hopes of helping others with a tragic story of their own, giving hope to those who may have gone through a similar situation. Now a Game Master for Knights of the Braille, he brings some time enjoyment to those unfortunate enough to be in his groups. Email Richard Follow Richard on Twitter Join Richard on Facebook About Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email Jim Follow Jim on Twitter
The Party are: Astrid Johannes-Balken Von Strauss, Human Artisan turned Soldier Dietrich Neumann, Human Wizard Fisk Søggard, Human River Warden This episode the Party finally discover who the Assassin at The Three Feathers Inn is! Will they save the Gravin Maria-Ulrike von Liebwitz of Ambosstein? Find out! This campaign follows the Enemy Within Adventure Book series created for Warhammer Fantasy Roleplay 4th Edition, by Cubicle 7. The following books were used to prepare this campaign: Warhammer Fantasy Roleplay Core Rulebook Enemy In Shadows Enemy In Shadows Companion Death on the Reik Death on the Reik Companion Middenheim: City of the White Wolf Rough Nights & Hard Days A Guide to Ubersreik Ubersreik Adventures 1 One Shots of the Empire Archives of the Empire Volume 1, Altdorf Crown of the Empire About Game Master Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email: KnightsOfTheBraille@Gmail.com Twitter: @BrailleKnight
Knights of the Braille are groups of blind and visually impaired table top roleplaying game enthusiasts. We bring together people with low vision, partially sighted, no functional vision and even those who are fully sighted to enjoy games together. We provide community, access to games and materials. Facebook Twitter website About Richard A senior in High School, set to graduate in a few months, in a nearly fatal car wreck on the Thanksgiving holiday of 2000. After losing his sight in the wreck, Richard shares his story in hopes of helping others with a tragic story of their own, giving hope to those who may have gone through a similar situation. Now a Game Master for Knights of the Braille, he brings some time enjoyment to those unfortunate enough to be in his groups. Email Richard Follow Richard on Twitter Join Richard on Facebook About Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email Jim Follow Jim on Twitter
The Party are: Astrid, Human Artisan Dietrich Neumann, Human Wizard Fisk Søggard, Human Riverwarden Jahn Stark, Human Villager This campaign follows the Enemy Within Adventure Book series created for Warhammer Fantasy Roleplay 4th Edition, by Cubicle 7. The following books were used to prepare this campaign: Warhammer Fantasy Roleplay Core Rulebook Enemy In Shadows Enemy In Shadows Companion Death on the Reik Death on the Reik Companion Middenheim: City of the White Wolf Rough Nights & Hard Days A Guide to Ubersreik Ubersreik Adventures 1 One Shots of the Empire Archives of the Empire Volume 1 About Dungeon Master Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email: KnightsOfTheBraille@Gmail.com Twitter: @BrailleKnight
Knights of the Braille are groups of blind and visually impaired table top roleplaying game enthusiasts. We bring together people with low vision, partially sighted, no functional vision and even those who are fully sighted to enjoy games together. We provide community, access to games and materials. Facebook Twitter website About Richard A senior in High School, set to graduate in a few months, in a nearly fatal car wreck on the Thanksgiving holiday of 2000. After losing his sight in the wreck, Richard shares his story in hopes of helping others with a tragic story of their own, giving hope to those who may have gone through a similar situation. Now a Game Master for Knights of the Braille, he brings some time enjoyment to those unfortunate enough to be in his groups. Email Richard Follow Richard on Twitter Join Richard on Facebook About Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email Jim Follow Jim on Twitter
The Party are: Astrid, Human Artisan Dietrich Neumann, Human Wizard Fisk Søggard, Human Riverwarden Jahn Stark, Human Villager This campaign follows the Enemy Within Adventure Book series created for Warhammer Fantasy Roleplay 4th Edition, by Cubicle 7. The following books were used to prepare this campaign: Warhammer Fantasy Roleplay Core Rulebook Enemy In Shadows Enemy In Shadows Companion Death on the Reik Death on the Reik Companion Middenheim: City of the White Wolf Rough Nights & Hard Days A Guide to Ubersreik Ubersreik Adventures 1 One Shots of the Empire Archives of the Empire Volume 1 About Dungeon Master Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email: KnightsOfTheBraille@Gmail.com Twitter: @BrailleKnight
Knights of the Braille are groups of blind and visually impaired table top roleplaying game enthusiasts. We bring together people with low vision, partially sighted, no functional vision and even those who are fully sighted to enjoy games together. We provide community, access to games and materials. Facebook Twitter website About Richard A senior in High School, set to graduate in a few months, in a nearly fatal car wreck on the Thanksgiving holiday of 2000. After losing his sight in the wreck, Richard shares his story in hopes of helping others with a tragic story of their own, giving hope to those who may have gone through a similar situation. Now a Game Master for Knights of the Braille, he brings some time enjoyment to those unfortunate enough to be in his groups. Email Richard Follow Richard on Twitter Join Richard on Facebook About Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email Jim Follow Jim on Twitter
Knights of the Braille are groups of blind and visually impaired table top roleplaying game enthusiasts. We bring together people with low vision, partially sighted, no functional vision and even those who are fully sighted to enjoy games together. We provide community, access to games and materials. Facebook Twitter website About Richard A senior in High School, set to graduate in a few months, in a nearly fatal car wreck on the Thanksgiving holiday of 2000. After losing his sight in the wreck, Richard shares his story in hopes of helping others with a tragic story of their own, giving hope to those who may have gone through a similar situation. Now a Game Master for Knights of the Braille, he brings some time enjoyment to those unfortunate enough to be in his groups. Email Richard Follow Richard on Twitter Join Richard on Facebook About Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email Jim Follow Jim on Twitter
The Party are: Astrid, Human Artisan Dietrich Neumann, Human Wizard Fisk Søggard, Human Riverwarden Jahn Stark, Human Villager This campaign follows the Enemy Within Adventure Book series created for Warhammer Fantasy Roleplay 4th Edition, by Cubicle 7. The following books were used to prepare this campaign: Warhammer Fantasy Roleplay Core Rulebook Enemy In Shadows Enemy In Shadows Companion Death on the Reik Death on the Reik Companion Middenheim: City of the White Wolf Rough Nights & Hard Days A Guide to Ubersreik Ubersreik Adventures 1 One Shots of the Empire Archives of the Empire Volume 1 About Dungeon Master Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email: KnightsOfTheBraille@Gmail.com Twitter: @BrailleKnight
Knights of the Braille are groups of blind and visually impaired table top roleplaying game enthusiasts. We bring together people with low vision, partially sighted, no functional vision and even those who are fully sighted to enjoy games together. We provide community, access to games and materials. Facebook Twitter website About Richard A senior in High School, set to graduate in a few months, in a nearly fatal car wreck on the Thanksgiving holiday of 2000. After losing his sight in the wreck, Richard shares his story in hopes of helping others with a tragic story of their own, giving hope to those who may have gone through a similar situation. Now a Game Master for Knights of the Braille, he brings some time enjoyment to those unfortunate enough to be in his groups. Email Richard Follow Richard on Twitter Join Richard on Facebook About Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email Jim Follow Jim on Twitter
The Party are: Astrid, Human Artisan Dietrich Neumann, Human Wizard Fisk Søggard, Human Riverwarden Jahn Stark, Human Villager This campaign follows the Enemy Within Adventure Book series created for Warhammer Fantasy Roleplay 4th Edition, by Cubicle 7. The following books were used to prepare this campaign: Warhammer Fantasy Roleplay Core Rulebook Enemy In Shadows Enemy In Shadows Companion Death on the Reik Death on the Reik Companion Middenheim: City of the White Wolf Rough Nights & Hard Days A Guide to Ubersreik Ubersreik Adventures 1 One Shots of the Empire Archives of the Empire Volume 1 About Dungeon Master Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email: KnightsOfTheBraille@Gmail.com Twitter: @BrailleKnight
Knights of the Braille are groups of blind and visually impaired table top roleplaying game enthusiasts. We bring together people with low vision, partially sighted, no functional vision and even those who are fully sighted to enjoy games together. We provide community, access to games and materials. Facebook Twitter website About Richard A senior in High School, set to graduate in a few months, in a nearly fatal car wreck on the Thanksgiving holiday of 2000. After losing his sight in the wreck, Richard shares his story in hopes of helping others with a tragic story of their own, giving hope to those who may have gone through a similar situation. Now a Game Master for Knights of the Braille, he brings some time enjoyment to those unfortunate enough to be in his groups. Email Richard Follow Richard on Twitter Join Richard on Facebook About Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email Jim Follow Jim on Twitter
The Party are: Astrid, Human Artisan Dietrich Neumann, Human Wizard Fisk Søggard, Human Riverwarden Jahn Stark, Human Villager This campaign follows the Enemy Within Adventure Book series created for Warhammer Fantasy Roleplay 4th Edition, by Cubicle 7. The following books were used to prepare this campaign: Warhammer Fantasy Roleplay Core Rulebook Enemy In Shadows Enemy In Shadows Companion Death on the Reik Death on the Reik Companion Middenheim: City of the White Wolf Rough Nights & Hard Days A Guide to Ubersreik Ubersreik Adventures 1 One Shots of the Empire Archives of the Empire Volume 1 About Dungeon Master Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email: KnightsOfTheBraille@Gmail.com Twitter: @BrailleKnight
This week we are joined by Matthew, AKA Blind Fury. We talk lots and lots of table top roleplayig games, great inspiration for any visually impaired enthusiasts. Knights of the Braille are groups of blind and visually impaired table top roleplaying game enthusiasts. We bring together people with low vision, partially sighted, no functional vision and even those who are fully sighted to enjoy games together. We provide community, access to games and materials. Facebook Twitter website About Richard A senior in High School, set to graduate in a few months, in a nearly fatal car wreck on the Thanksgiving holiday of 2000. After losing his sight in the wreck, Richard shares his story in hopes of helping others with a tragic story of their own, giving hope to those who may have gone through a similar situation. Now a Game Master for Knights of the Braille, he brings some time enjoyment to those unfortunate enough to be in his groups. Email Richard Follow Richard on Twitter Join Richard on Facebook About Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email Jim Follow Jim on Twitter
The Party are: Astrid, Human Artisan Dietrich Neumann, Human Wizard Fisk Søggard, Human Riverwarden Jahn Stark, Human Villager This campaign follows the Enemy Within Adventure Book series created for Warhammer Fantasy Roleplay 4th Edition, by Cubicle 7. The following books were used to prepare this campaign: Warhammer Fantasy Roleplay Core Rulebook Enemy In Shadows Enemy In Shadows Companion Death on the Reik Death on the Reik Companion Middenheim: City of the White Wolf Rough Nights & Hard Days A Guide to Ubersreik Ubersreik Adventures 1 One Shots of the Empire Archives of the Empire Volume 1 About Dungeon Master Jim A legally blind, low vision gaming enthusiast with Stargardt Disease. Originally a plumber, Jim became involved in accessibility advocacy in his work and free time after becoming legally blind in 2012. If you have any questions about Jim or his eye condition, please leave a comment. Email: KnightsOfTheBraille@Gmail.com Twitter: @BrailleKnight
Bradford and Bryan Manning are brothers, entrepreneurs and business partners. They both share a degenerative retinal eye disease called Stargardt Disease, where you lose your central vision over time. Five years apart in age, both Brad and Bryan started losing their central vision around 5 years old. Today, Brad and Bryan explain that they really … Continue reading "Two Blind Brothers"
“Your disability does not preclude you from anything. In fact, your biggest challenge is your BEST empowerment!” – Bryan Manning On this episode, we spend time talking with Bradford and Bryan Manning, two brothers on a mission to cure blindness. At a young age, Bradford and Bryan were both diagnosed with a rare eye disease, called Stargardt Disease, that destroys central vision over time. They decided to fight back and left their careers in finance to start a charitable clothing company and is now the fastest growing charitable clothing brand in the country with endorsements from Ellen Degeneres, Ashton Kutcher, Richard Branson, NBC Nightly News, and many more. Not only is their company a success through their products and endorsements, but the brothers took it a step further and hired 70% blind and visually-impaired workers to produce the clothing AND they donate 100% of their profits to researchers and the Foundation Fighting Blindness to find cures for blindness. “We want to provide hope.” “If you can identify what unique aspect you have in your life and are motivated, we want to be your cheerleader.” – Bradford Manning For more information about Two Blind Brothers: https://twoblindbrothers.com/ (https://twoblindbrothers.com) https://www.facebook.com/twoblindbros/ (https://www.facebook.com/twoblindbros/) https://instagram.com/twoblindbrothers (https://instagram.com/twoblindbrothers) https://twitter.com/TwoBlindBros (https://twitter.com/TwoBlindBros) https://www.youtube.com/channel/UCtsHxYoaxKBDl_kMQmtLPCw (https://www.youtube.com/channel/UCtsHxYoaxKBDl_kMQmtLPCw) Support us on Patreon! https://www.patreon.com/nocofm (https://www.patreon.com/nocofm) Hosted by Dr. Natalie Phillips. Produced by Chris Lanphear for NoCo FM. Hear more great podcasts at https://noco.fm/ (https://noco.fm) Follow Natalie: https://twitter.com/AudioDrPhillips (https://twitter.com/AudioDrPhillips) https://www.facebook.com/Connect4Excellence (https://www.facebook.com/Connect4Excellence) https://www.instagram.com/drnataliephillips (https://www.instagram.com/drnataliephillips) Follow NoCo FM: https://twitter.com/nocofm (https://twitter.com/nocofm) https://instagram.com/nocofm (https://instagram.com/nocofm) https://www.facebook.com/nocofm (https://www.facebook.com/nocofm) Support this podcast
“Your disability does not preclude you from anything. In fact, your biggest challenge is your BEST empowerment!” – Bryan Manning On this episode, we spend time talking with Bradford and Bryan Manning, two brothers on a mission to cure blindness. At a young age, Bradford and Bryan were both diagnosed with a rare eye disease, called Stargardt Disease, that destroys central vision over time. They decided to fight back and left their careers in finance to start a charitable clothing company and is now the fastest growing charitable clothing brand in the country with endorsements from Ellen Degeneres, Ashton Kutcher, Richard Branson, NBC Nightly News, and many more. Not only is their company a success through their products and endorsements, but the brothers took it a step further and hired 70% blind and visually-impaired workers to produce the clothing AND they donate 100% of their profits to researchers and the Foundation Fighting Blindness to find cures for blindness. “We want to provide hope.” “If you can identify what unique aspect you have in your life and are motivated, we want to be your cheerleader.” – Bradford Manning For more information about Two Blind Brothers: https://twoblindbrothers.com (https://twoblindbrothers.com/) https://www.facebook.com/twoblindbros/ (https://www.facebook.com/twoblindbros/) https://instagram.com/twoblindbrothers (https://instagram.com/twoblindbrothers) https://twitter.com/TwoBlindBros (https://twitter.com/TwoBlindBros) https://www.youtube.com/channel/UCtsHxYoaxKBDl_kMQmtLPCw (https://www.youtube.com/channel/UCtsHxYoaxKBDl_kMQmtLPCw) Support us on Patreon! https://www.patreon.com/nocofm (https://www.patreon.com/nocofm) Hosted by Dr. Natalie Phillips. Produced by Chris Lanphear for NoCo FM. Hear more great podcasts at https://noco.fm (https://noco.fm/) Follow Natalie: https://twitter.com/AudioDrPhillips (https://twitter.com/AudioDrPhillips) https://www.facebook.com/Connect4Excellence (https://www.facebook.com/Connect4Excellence) https://www.instagram.com/drnataliephillips (https://www.instagram.com/drnataliephillips) Follow NoCo FM: https://twitter.com/nocofm (https://twitter.com/nocofm) https://instagram.com/nocofm (https://instagram.com/nocofm) https://www.facebook.com/nocofm (https://www.facebook.com/nocofm) Support this podcast
Today's programme focuses on Stargardt disease and the research underway into the condition.Guest: Professor Robert MacLaren, leading Professor of Ophthalmology at University of Oxford, discusses his research into using gene therapy to treat the condition, aided by Fight for Sight funding.For more info on Stargardt disease or to donate to eye research, visit our website.
Leba Sherman is a mom of three trying to raise awareness for people with Stargardt Disease. After being diagnosed with the disease, Leba started her fashion company Patched by Elle to help raise money for research and awareness. Passionate about educating people, Leba is on a mission to inspire others to live their life to the fullest. What you will hear in this episode: - When was the last time that you really though about your vision?Did you know that we use our brain to fill in the missing blanks when we have trouble seeing? In this episode, Leba Sherman shared her story about being diagnosed with Stargardt Disease (a rare disease that causes macular degeneration). - Leba candidly talks about her initial shock and grief at receiving this sudden diagnoses. She also shares what it is like to live day to day with impaired vision. Despite the many obstacles Leba faces, she feels like this diagnoses was a wake up call to really live her life to the fullest. Grateful for the what she is able to see and do, Leba is passionate about educating others and inspiring them to be present and grateful. -We chat about Leba's exciting new venture Patched by Elle. Always a fan of fashion, Leeba creates fabulous customs demin jackets with part of the proceeds going to research on Stargardt diesease. -You can read more about Leba's journey here. Favorites: form of self care: yoga city: Los Angeles quote: " Life is a journey not a destination" You can reach Leba @patched_by_elle This episode is sponsored by Fleishigs magazine. Get 25% off your subscription by entering code BOSSMAIDEL. -
Interview with Hendrik Scholl, M.D., M.A., author of Progression of Stargardt Disease as Determined by Fundus Autofluorescence Over a 12-Month Period: ProgStar Report No. 11
Interview with Hendrik Scholl, M.D., M.A., author of Progression of Stargardt Disease as Determined by Fundus Autofluorescence Over a 12-Month Period: ProgStar Report No. 11
Welcome to Episode 8 of My New Normal with special guests Amanda Bonham and Movement Rx’s own Dr. Megan Graff! This episode really has it all: we’re talking pregnancy, what it’s like to be legally blind, what it’s like to train pregnant, what it’s like to live in SoCal, and so much more. Without further ado, let’s get into it! Amanda is from Tennessee, but moved to SoCal when she met her husband. She’s a massage therapist and has been for about 11 years. Megan moved to California from Texas for Movement Rx (yay!!) and the adaptive community and the Challenged Athletes Foundation. Amanda was diagnosed with her condition (Stargardt Disease) when she was 10 years old, which was a pretty traumatizing experience for her. At the time, no one really knew much about it so no one explained to her that she had a degenerative eye disease. No one explained that her condition would worsen, so she didn’t appropriately prepare herself for the inevitability of going blind. In high school her vision started to more rapidly change and she needed more visual aides, which is when she realized that things were going to change. She switched to a private school and commuted to school and started to shift her plans for the future. Amanda’s way of coping in high school was denial and avoidance. She struggled with depression, anorexia, and cutting. She was placed in multiple treatment centers, but none ever took. Her first day of her Junior year in high school she had a major breakdown and was asked to leave and was sent to a lockdown treatment program where she spent 11 months. During the treatment program, which she credits with saving her life, she was forced to address her condition head-on and finally cope with the anger and emotions that she hadn’t dealt with before. TRIGGER WARNING: this episode contains conversation about food disorders and suicidal thoughts. In this episode we’re talking about: What it’s like to be blind What it’s like to be blind and pregnant Training when you’re pregnant and blind How movement can help people cope with PTSD How to train someone who is blind and pregnant And so so so so much more….. Listen to My New Normal Podcast here: YouTube iTunes Google Podcast Spotify To check out my Functional Training for the Adaptive Athlete Online Course (eligible for 0.5 CEU's for NSCA under Category D), visit: https://www.drtheresalarson.com/adaptive-trainers-course/ Help My New Normal raise $2,500 for Challenged Athlete Foundation by January 31st 2019: http://support.challengedathletes.org/site/TR/Events/General?px=1289385&pg=personal&fr_id=1611
Identical twins Fabiana and Paula Chávez are pianists, music researchers and music educators born in Buenos Aires, Argentina. The twin sisters lost their eyesight gradually due to a genetic disorder called Stargardt Disease, which eventually left them completely blind. This new condition allowed Fabiana and Paula to commence a unique research activity to help visually-impaired music students to find the best way to read music scores and improve their playing. RNIB Connect Radio's Barry Snell caught up with them, to learn more about their prestigious talents and also to find out about their latest project 'Piano Sin Barreras' (piano without Barriers). To find out more about Fabian and Paula visit [www.chaveztwins.com](http://www.chaveztwins.com/)
Bryan and Bradford Manning were told they were going blind from an eye disease called Stargardt Disease when they were kids. I met up with them in NYC and talked with them about learning at an early age about their disease, what it was like growing up knowing you are losing eye sight, an attempt at driving, going on the Ellen Degeneres Show, dating, starting a clothing company designing clothes for the blind in mind and raising money for the Foundation Fighting Blindness and much more!!! Please Listen, Please Share, Please Enjoy!! Twitter @ejscott @EJPodcast website www.ejscott.com INSTAGRAM @ejscott1106 RUNNING BLIND Documentary available on iTunes, Google Play, Amazon Please review and rate the podcast on Twitter!
We will reintroduce you to 3 Courageous Women who has important issues and information to share with you.. ** Special Guest Co-Host Pamela Denise Billingsley will educate us on Stargardt Disease which causes blindness.. ** Ohio State Representative Candidate Cassandra McDonald will discuss Criminal / Judicial Reform and is it working.. ** Founder of Rising Star Dr. Camelia Straughn joins us to continue to assist in Finding Your Bliss.. Join the TEAM EVERY SUNDAY for the show that focuses on educating, elevating & motivating our listeners to a higher level of consciousness and awareness in order to empower & uplift our communities around the World!!.
Stargardt macular degeneration is a genetic eye disease that affects about 1 in 8 to 10 thousand people. Jeff Hoskins is a sound engineer, drummer, and a decreasingly avid cyclist who has Stargardt's. We chat about his condition; its origins, symptoms, and challenges. We also try to make a fancy cocktail called the Eye Opener from an old mixology manual that Jeff gave me. He helps me record this episode, and I help him sew. Plus--drum solo!
For the third episode of Ability I talk to Shannon McCaffrey who has Stargardt disease a type of blindness. I have been waiting to do this episode since the beginning and I hope you enjoy it. Learn about Stargardt Disease Follow Ability on Twitter Follow Jacob on Twitter Special Guest: Shannon McCaffrey.
Miracle Moment Pamela Madden has diminishing vision because of Stargardt Disease. It is a degenerative retinal disorder that has dimmed the lights, so to speak, and taken away Pamela’s peripheral vision. While riding in to her first healing service with … Continue reading → The post A New Use for Business Cards appeared first on BLIND FAITH LIVE ! Real People. Real Miracles..
Miracle Moment Pamela Madden has diminishing vision because of Stargardt Disease. It is a degenerative retinal disorder that has dimmed the lights, so to speak, and taken away Pamela’s peripheral vision. While riding in to her first healing service with … Continue reading → The post A New Use for Business Cards appeared first on BLIND FAITH LIVE ! Real People. Real Miracles..
Robert Lanza discusses two-year follow-up findings of human embryonic stem-cell transplantation in the potential treatment of Stargardt's Macular dystrophy and age-related macular degeneration.
The boys are back in the studio bringing you a brand new episode of Eye Cons! Stargardt Disease, Diabetic Retinopathy and Charles Bonnet Syndrome are on the list this time, so sit back and let the boys tell you what they are based on 10 minutes of research. Contact Us Email: seesawpodcast@gmail.com Twitter: https://twitter.com/SeeSawPod Reddit: https://www.reddit.com/r/seesawpodcast/ Support this podcast at — https://redcircle.com/the-see-saw-podcast/exclusive-contentAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy
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