Podcasts about moebius syndrome

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Best podcasts about moebius syndrome

Latest podcast episodes about moebius syndrome

Art Heals All Wounds
Saving Face: Effy Redman on Disability, Identity, and Advocacy

Art Heals All Wounds

Play Episode Listen Later Jul 10, 2024 49:25 Transcription Available


In this episode of Art Heals All Wounds, host I talk with author and disability advocate Effy Redman about the transformative power of art. Effy shares insights from her memoir, 'Saving Face,' which chronicles her life with Moebius Syndrome, a condition that affects her ability to make facial expressions. Effy speaks candidly about her experiences with shame, disability advocacy, and the intersection of LGBTQ identity. She also highlights the significance of therapy and writing in her journey toward self-acceptance and empowerment. This episode delves into personal stories, familial relationships, and the broader implications of disability and identity, offering listeners a deep and empathetic understanding of Effy's experience. 00:00 Introduction to Art Heals All Wounds00:34 Exploring the Power of a Smile01:12 Effy Redman's Journey with Moebius Syndrome02:51 Effy's Advocacy and Writing17:29 Navigating Family Dynamics40:51 Intersection of Disability and LGBTQ Identity47:42 Conclusion and Contact InformationDon't forget to go to my website and leave me YOUR story of belonging to feature on a future episode!Buy Me a Coffee!Follow Effy! WebsiteInstagramFacebookLinkedInFollow Me!●      My Instagram ●      My LinkedIn●      Art Heals All Wounds Website●      Art Heals All Wounds Instagram●      Art Heals All Wounds Facebook

Arts Calling Podcast
142. Effy Redman | Saving Face, writing a memoir, and claiming identity

Arts Calling Podcast

Play Episode Listen Later May 16, 2024 43:57


Weekly Shoutout: Friend of the show Alvaro Saar Rios on The Scene Podcast, give it a listen! -- Hi there, Today I am so excited to be arts calling author Effy Redman! (www.effyredman.com) About our guest: Effy Redman's writing investigates the intersection of disability and identity. She has work published in The New York Times, Vice, Ravishly, Chronogram, Berkeley Poetry Review, and Iron Horse Literary Review, among other places. She holds an MFA in Memoir from CUNY: Hunter College, where she received an Honorable Mention for the Helen Gray Cone Fellowship, and a BA in Literature/Drama from Bennington College, where she was an Ellen Knowles Harcourt Scholar and a Bennington Scholar. effyredman.com. Twitter: @effyredman Facebook: Effy Redman Instagram: @effyredman38 Thanks for this wonderful conversation, Effy! All the best! -- SAVING FACE, now available from Vine Leaves Press! https://www.vineleavespress.com/saving-face-by-effy-redman.html ABOUT SAVING FACE: What's in a smile? Or the absent smile? Saving Face is Effy Redman's thought-provoking answer. Born with a rare condition of facial paralysis called Moebius Syndrome, Redman's grit and eye for beauty help her survive childhood bullying and adolescent doldrums. Her physical transformation at age thirteen via plastic surgery eviscerates her concept of image, just in time for her and her family to immigrate from hardscrabble Manchester, England to America's disorientingly scenic upstate New York. Not until diagnosis in young adulthood with bipolar disorder does Redman come out of the closet as a lesbian, finally claiming her most inherent identity. Saving Face is a searing personal tribute to anybody who has ever felt like an outsider. This memoir honors the grace of a face that stands out in a crowd, defying societal beauty norms. Disability meets transcendence, suffering becomes hope, and the individual expands into community. The inability to smile, in Redman's book, lights a window onto the human capacity for redemption. ★★★★★ “This author goes where no other might dare.” Catherine Filloux, award-winning playwright -- Arts Calling is produced by Jaime Alejandro (cruzfolio.com). HOW TO SUPPORT ARTS CALLING: PLEASE CONSIDER LEAVING A REVIEW, OR SHARING THIS EPISODE WITH A FRIEND! YOUR SUPPORT TRULY MAKES A DIFFERENCE, AND I CAN'T THANK YOU ENOUGH FOR TAKING THE TIME TO LISTEN. Much love, j

Town Hall Seattle Civics Series
357. Susannah Fox with Sally James: Rebel Health

Town Hall Seattle Civics Series

Play Episode Listen Later May 9, 2024 56:14


  Anyone who has fallen off the conveyor belt of mainstream health care and into the shadowy corners of illness knows what a dark place it is to land. Where is the infrastructure, the information, the guidance? What should you do next? In her new book, Rebel Health, Susannah Fox draws on twenty years of tracking the expert networks of patients, survivors, and caregivers who have come of age between the cracks of the healthcare system to offer a way forward. Covering everything from diabetes to ALS to Moebius Syndrome to chronic disease management, Fox taps into the wisdom of these individuals, learns their ways, and fuels the rebel alliance that is building up our collective capacity for better health. Rebel Health shows how the next wave of health innovation will come from the front lines of this patient-led revolution. Join us for an event that is both proactive and innovative, as Susanna Fox paves the way for a collective capacity for better health and a patient-led revolution in medical care. Susannah Fox helps people navigate health and technology. She served as Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. Prior to that, she was the entrepreneur-in-residence at the Robert Wood Johnson Foundation and directed the health portfolio at the Pew Research Center's Internet Project. Sally James is a writer whose curiosity about people has taken her from jails to hospitals to schools to research labs. Once a staff member on daily newspapers, she has been an independent writer on medicine and science for many years. She has reported stories for the South Seattle Emerald, Parentmap, Seattle Business, and other outlets. She is a former president of the Northwest Science Writers Association, a nonprofit supporting science communication.   Buy the Book Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care The Elliott Bay Book Company

Commonwealth Club of California Podcast
Susannah Fox: Rebel Health

Commonwealth Club of California Podcast

Play Episode Listen Later Apr 18, 2024 66:49


Anyone who has fallen off the conveyer belt of mainstream health care and into the shadowy corners of illness knows what a dark place it is to land. Where is the infrastructure, the information, the guidance? What should you do next? Susannah Fox draws on 20 years of tracking the expert networks of patients, survivors, and caregivers who have come of age between the cracks of the health-care system to offer a way forward. Covering everything from diabetes to ALS to Moebius Syndrome to chronic disease management, Fox taps into the wisdom of these individuals, learns their ways, and fuels the rebel alliance that is building up our collective capacity for better health. Join us for a special online-only talk as Fox discusses the issues raised in her new book Rebel Health, an action-oriented and radically hopeful field guide to the underground, patient-led revolution for better health and health care. Fox says the next wave of health innovation will come from the front lines of this patient-led revolution. Fox identifies and describes four archetypes of this revolution: seekers, networkers, solvers and champions. She has collected tips, such as picking a proxy to help you navigate the relevant online communities or learning how to pitch new ideas to investors and partners or new treatments to the FDA. On a systemic level, this “rebel health” movement is a competitive advantage for businesses, governments and organizations to understand and leverage the power of connection among patients, survivors and caregivers. Learn more about your ad choices. Visit megaphone.fm/adchoices

health als fda covering rebel susannah fox moebius syndrome
The Transitions Project
S2 | Ep 69: Saving Face w/ Effy Redman & Catherine Filloux

The Transitions Project

Play Episode Listen Later Mar 12, 2024 65:07


In this unique episode, Patricia and her writing mentor, Catherine Filloux, interview Effy Redman about the gestational process for her memoir, Saving Face.   About Effy, our featured memoirist: Effy Redman's writing investigates the intersection of disability and identity, building bridges in minority communities. Drawing from her journey as a lesbian with Moebius Syndrome (a rare condition of facial paralysis), she writes into the experience of otherness, finding resilience beyond the shadows. Her first book—SAVING FACE—a memoir of living with physical disability—will be published by Vine Leaves Press in March 2024. Redman has  published work in The New York Times, Vice, Ravishly, Chronogram, Berkeley Poetry Review, and Iron Horse Literary Review, among other places. She holds an MFA in Memoir from CUNY: Hunter College, where she received an Honorable Mention for the Helen Gray Cone Fellowship, and a BA in Literature/Drama from Bennington College, where she was an Ellen Knowles Harcourt Scholar and a Bennington Scholar.   About Catherine Filloux, our cohost: For the past three decades, French Algerian American award-winning playwright, librettist and activist Catherine Filloux has been traveling to conflict areas writing plays that address human rights. Filloux's new play “How to Eat an Orange” opens this season at La MaMa Theatre in New York City, and her new musical “Welcome to the Big Dipper” (composer Jimmy Roberts, “I Love You, You're Perfect, Now Change”) premieres Off-Broadway this season at the York Theatre in New York City; a National Alliance for Musical Theatre finalist. Catherine's new play “White Savior” is nominated for The Venturous Play List. Her many plays have been produced around the U.S. and internationally. She is the librettist for four produced operas, broadcast on Cambodian national TV, on Broadway on Demand, chosen for Opera News Critic's Choice; and “Orlando” is the 2022 Grawemeyer award winner--the first opera by a woman composer and woman librettist in the history of the Vienna Staatsoper. Catherine has traveled for her plays to countries including Bosnia, Cambodia, Guatemala, Haiti, Iraq, Morocco, Northern Ireland; and to Sudan and South Sudan on an overseas reading tour with the University of Iowa's International Writing Program. Filloux received her French Baccalaureate in Philosophy with Honors in Toulon, France, and is the co-founder/co-director of Theatre Without Borders. www.catherinefilloux.com   How to Buy Effy's Book: You can pre-order Saving Face at https://www.vineleavespress.com/saving-face-by-effy-redman.html. There are options here to purchase Effy's book on bookshop.org, Amazon, and Barnes and Noble. Effy encourages readers to use bookshop.org, because this venue supports local bookstores.   Connect with Effy: Website: www.effyredman.com Instagram @effyredman38 Facebook: Effy Redman   ****   Ready to make a change? Book your free Explore Call with Patricia.   Patricia's 1:1 and group coaching programs are about becoming the active designer of your life through any transitional phase. Learn more at https://www.patriciacosulich.com.   Share this episode and tag us on social media! @patricia.cosulich & @the_transitions_podcast  

Karl's Coaching Podcasts
238 – Will Harrison – Walk With Me

Karl's Coaching Podcasts

Play Episode Listen Later Feb 5, 2023 47:34


Will is a licensed clinical social worker who currently works as a therapist in the Detroit area. Will has been married to Heather for 16 years and they have 5 kids. Will has a lifelong disability called Moebius Syndrome and is passionate about advocating for those with disabilities. Will is also passionate about helping those…Read more →

walk detroit moebius syndrome
Mental Podcast
09. Resiliency w/ Will Harrison

Mental Podcast

Play Episode Listen Later Jan 14, 2023 29:29


Will Harrison is a social worker whose life exemplifies resiliency. Will has Moebius Syndrome which is a rare neurological condition that primarily affects the muscles that control facial expression and eye movement. As a result, Will experiences weakness or paralysis of his facial muscles. While these health complications have been overwhelming, Will has gone on to become a therapist to impact the lives of many. Tune in to learn more. Support this podcast at — https://redcircle.com/mental-podcast/exclusive-contentAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

resiliency will harrison moebius syndrome
The Rise & Conquer Podcast
Self-acceptance with the girl who can't smile, Tayla Clement

The Rise & Conquer Podcast

Play Episode Listen Later Nov 7, 2022 53:24


TRIGGER WARNING for Bullying, Harrassment, SA & Suicide Tayla Clement (aka the girl who can't smile) comes on the poddy today and we chat about her incredible journey. Tayla was diagnosed with Moebius Syndrome when she was 8 months old - she is 1 in 4 million. She talks to us about her journey of self-acceptance, she is one of the most inspiring, resilient people we've ever had on the podcast. Tayla opened up about her journey, a journey no one should ever have to go through, but she has come out the other end with the most powerful message and we can't wait for you to hear it. This ep will teach you how to embrace your uniqueness because it is YOUR SUPERPOWER. If you've ever struggled with confidence, self-acceptance or are just on your personal development journey this is the ep for you! PS. Sorry for all the crying - we recorded this just after a new moon.  You can find Tayla here. If you are wanting to have your dilemma answered on the poddy, make sure you DM our poddy Instagram, click here. You can find our website here. You can join our Facebook group here.  You can shop Naked Harvest here, use code RISEANDCONQUERPODCAST at checkout. Click here to find out more information about the Rise and Conquer Project, our 7 week self-development and manifesting course.See omnystudio.com/listener for privacy information.

The Rise & Conquer Podcast
Self-acceptance with the girl who can't smile, Tayla Clement

The Rise & Conquer Podcast

Play Episode Listen Later Nov 7, 2022 55:08


TRIGGER WARNING for Bullying, Harrassment, SA & Suicide  Tayla Clement (aka the girl who can't smile) comes on the poddy today and we chat about her incredible journey.  Tayla was diagnosed with Moebius Syndrome when she was 8 months old - she is 1 in 4 million. She talks to us about her journey of self-acceptance, she is one of the most inspiring, resilient people we've ever had on the podcast. Tayla opened up about her journey, a journey no one should ever have to go through, but she has come out the other end with the most powerful message and we can't wait for you to hear it. This ep will teach you how to embrace your uniqueness because it is YOUR SUPERPOWER. If you've ever struggled with confidence, self-acceptance or are just on your personal development journey this is the ep for you!  PS. Sorry for all the crying - we recorded this just after a new moon.   You can find Tayla here.  If you are wanting to have your dilemma answered on the poddy, make sure you DM our poddy Instagram, click here.  You can find our website here.  You can join our Facebook group here.   You can shop Naked Harvest here, use code RISEANDCONQUERPODCAST at checkout.  Click here to find out more information about the Rise and Conquer Project, our 7 week self-development and manifesting course.

Busy House, Happy Home
Conversation with Katie Tew about changing careers, asking for help, life with Moebius Syndrome and more!

Busy House, Happy Home

Play Episode Listen Later May 11, 2022 26:17


A lovely chat with one of Charlie's oldest friends, Katie Tew.About Katie:Katie Tew is the Founder and Managing Director of Katie-VA and is a passionate advocate of the virtual assistant profession. Having seen the profession develop and evolve over the last decade, Katie is committed to ensuring that the reputation of the VA industry around the world gains the recognition it deserves by sharing her experience and best practice advice. Katie's unique and first-hand experience of being a professional virtual assistant has led her to becoming a regular contributor and speaker at events for established, emerging and aspiring VA's globally. Prior to setting up Katie-VA.com (add comma here) Katie worked in international private banking and international executive search (add full stop here) Katie is married to Mark, her long-suffering better half and has a grown-up daughter Serena who is currently studying to become a nurse at Oxford Brookes University.

All That Glitters
Tayla Clement

All That Glitters

Play Episode Listen Later Dec 14, 2021 61:45


Tayla Clement has been through more in her short life than anyone should ever have to go through. Born with the rare Moebius Syndrome which causes facial paralysis and also resulted in talipes (otherwise known as clubfoot). This enabled her to gain qualification into para sport and despite going through extraordinary difficulties which we talk about in our conversation, she continued, if only for a short time, to have an incredibly successful sporting career in TWO vastly different sports. This is a funny, difficult, honest and beautiful conversation with a woman who has been through so much and yet has the most kind, warm and loving outlook on life. We all have so much to learn from Tayla. I absolutely loved this conversation and I’m sure you will too. Enjoy x Just a warning that this conversation discusses suicide and sexual assault, so if any of this is an issue for you, please call Lifeline on 13 11 14 or reach out to 1800RESPECT Tayla on Instagram: @taylaclement Contact hello@strozkiymedia.com for sponsorship opportunities. Host: Libby Trickett Instagram: @allthatglitterspod Produced by: Strozkiy Media (@strozkiymedia) www.strozkiymedia.com See omnystudio.com/listener for privacy information.See omnystudio.com/listener for privacy information.

lifeline clement tayla moebius syndrome
Divine Calling with Stephanie Riggs
EPISODE 18 - TRUE BEAUTY

Divine Calling with Stephanie Riggs

Play Episode Listen Later Sep 1, 2021 18:43


This podcast puts things in perspective for me. My guest, Karla Hogan, could've given up, but she did not! Instead, she embraced who she is and how she was born and thanks God everyday for her True Beauty!

The Psychologists Podcast
Disability Is Diversity with Dr. Kathleen Bogart

The Psychologists Podcast

Play Episode Listen Later Aug 7, 2021 65:39


“Moebius Syndrome is rare, but disability is the most common minority in the world. 25% of Americans are disabled.” Today we learn from Dr. Kathleen Bogart, social psychologist and disability expert, about growing up with facial paralysis, “alternative expressions”, universal design, the dangers of disability simulation activities (and alternatives), disability spread, ableism, and the moral/medical/social models of disability. This one will leave you thinking hard about going “back to normal” after COVID, and it'll probably make you want to re-watch The Lion King, too.—Dr. Kathleen Bogart is an Associate Professor of Psychology at Oregon State University and a blogger at Psychology Today. As a person with a disability, she is passionate about researching, educating, and writing about ableism, or disability prejudice. Her research focuses on the psychosocial implications of living with disability, rare disorders, or facial differences such as Moebius syndrome. Her work has been featured in the New York Times, Time, and the Financial Times.—DARN on Twitter: @DarnNetwork = a new group for disabled folks and allies at any career stage in social, personality, and health #psychology, and related fieldsMoebius Syndrome Foundation: https://moebiussyndrome.orgNational Organization for Rare Disorders: https://rarediseases.org All Kathy's links: https://linktr.ee/KathleenBogartKathleen's “Meanwhile” piece on TEDx: TEDxUofW 2021: Meanwhile“Disability Is Diversity” Psychology Today blog: https://www.psychologytoday.com/us/blog/disability-is-diversityOregon State research lab: https://liberalarts.oregonstate.edu/sps/dsilThe Perfect Recipe Project: https://perfectrecipeproject.blogspot.com/?m=1——-Welcome to The Psychologists Podcast, where we talk about all things psychology through a very personal lens.Gill Strait PhD and Julia Strait PhD are both Licensed Psychologists (TX) and Licensed Specialists in School Psychology (LSSPs, TX). They are alumni of The University of South Carolina School Psychology Doctoral Program (Go Gamecocks).Gill is a teacher, researcher, and supervisor at a university graduate psychology training program.Julia is a testing psychologist at Stepping Stone Therapy in Houston, TX: https://steppingstonetherapy.org/strait/ Instagram: @drjuliatx https://www.instagram.com/drjuliatx/?hl=en

The Self-Love Club®
Tayla Clement 'Turning pain into power, positive self-love mindsets'

The Self-Love Club®

Play Episode Listen Later Jul 4, 2021 60:08


Hi hello gorgeous pals! On the show we're joined by someone who is really going to inspire you, Tayla Clement. Tayla was born with an extremely rare neurological disorder which affects 1 in 3-4 million called Moebius Syndrome, which means Tayla can't smile. Tayla was bullied so relentlessly hearing about it made me cry and from as young as 12 years old she had multiple suicide attempts but decided to keep going, turning her pain into power. Tayla is a talented swimmer and represented New Zealand as a Paralympian in shot put and discus setting a world record. Tayla's story is very powerful and we cover it all in this conversation which we can all take a lot away from, plus she's got a crack up dating app story. TW: This episode mentions suicidal thoughts and suicide but not in detailWHERE TO GET HELP:NZ: Free txt or call 1737 24/7 If it's an emergency and someone is at risk call 111 Australia: Lifeline 13-11-14USA: Suicide Prevention Helpline 1-800-273-8255UK: 1-800 784-2433 and 1-800-273-8255We're an independent podcast dedicated to delivering content for millennial women and chatting about stuff that matters.You can support us by:- Clicking subscribe on your go to podcast app, click follow on Spotify - Leave us 5 stars and a review if you're enjoying listening- Show us where you're listening or screenshot and post on your Instagram story and tag us @selfloveclubpodcast in it so we can see and share- Share with your friends, sisters, workmates, everyone! - Delve into and listen to our 2.5 year back log Keep up with us and follow: @selfloveclubpodcast and Bel @belcrawford on Instagram Leave us a voice message sharing your thoughts on our sparkly new hotline hotline@belcrawford.com and you may be featured on the show!Thanks to our sponsor Caci for making this episode possible Try Caci's new Exceed Microneedling treatment for glowing, healthier-looking skincaci.co.nz

Fun Times with Dana and Heidi
Anticlimactic Popsicles and Masterful Minds

Fun Times with Dana and Heidi

Play Episode Listen Later May 12, 2021 17:38


Join co-hosts Dana and Heidi as they discuss the latest positive news stories, including a 4 year old who bought over $2,500 worth of SpongeBob popsicles online, a heroic boy with Moebius Syndrome who donated his contest winnings to charity, innovations in CRISPR Cas-9 gene editing, and a book to help bring you the mental strength you need.

Labelling The Disabling
Moana and Vinny Hope: Powerful Sisters

Labelling The Disabling

Play Episode Listen Later Dec 23, 2020 28:09


In this episode we meet with the high achieving sisters Moana and Lavinia Hope. Mo and Vinny grew up as part of a big family of 14 kids and Mo quit school in the early stages of High School to take care of her sick father. At 26, Moana became the carer for her sister Vinny who lives with Moebius Syndrome a rare neurological condition affecting facial muscle and eye movement.Moana is well known for her outstanding AFLW career including a 100 goal season at the St Kilda Sharks and for her appearances on Survivor All Stars. We talk with the sisters about their lives in Melbourne’s COVID lockdown, how they support one another, setting goals and staying motivated, running a business, their growing family, the importance of inclusion and Mo’s great new autobiography “My Way”

Experts Connect (with HelpMeSara & guest)
Perfectly flawed: Learning to fully accept and embrace one's self

Experts Connect (with HelpMeSara & guest)

Play Episode Listen Later Jun 25, 2020 44:41


Sara Dimerman in conversation with Katharine Love. Over the course of this episode you will learn more about: Katharine's growing up years and how they impacted her – for better and worse How she overcame an eating disorder and learnt to embrace her heavier self How she learnt to live a more authentic life despite obstacles along the way How her diagnosis of Moebius Syndrome helped her understand herself better How she practises radical acceptance in order to find peace Why she wrote her memoir, Perfectly Flawed, and what it's all about How you can benefit from her life lessons and learn to embrace and accept yourself too

Unique Smiles: The Facial Paralysis Podcast
Episode 16: Zoe Cross (Moebius Syndrome)

Unique Smiles: The Facial Paralysis Podcast

Play Episode Listen Later Apr 28, 2020 36:50


In Episode 16, we talk to Zoe Cross who has facial paralysis as a result of Moebius Syndrome. We discuss growing up with Moebius, the mindset to achieve a great life, dating and having her first kiss in her 40's, and advice for people with facial paralysis. We would love to hear your feedback.    All episodes now available on YouTube: https://www.youtube.com/channel/UC8-mx9TaB1Crol2vlMjHB5Q   If you have any questions/comments about the podcast please comment below or contact us at:  CONNECT WITH US! https://www.facebook.com/Unique-Smiles-Podcast-168413050468091/ https://twitter.com/UniqueSmilesPod Email: UniqueSmilesPodcast@gmail.com   A big THANK YOU to our sponsors: http://facialparalysisfoundation.org/  and    https://www.risephysicaltherapy.com/   Also, a big THANK YOU to Wes Hutchinson for allowing the use of his beautiful song, "Summer Love" for the podcast. You can check Wes' music at https://weshutchinson.com/  

Unique Smiles: The Facial Paralysis Podcast
Episode 12: Steven Maldonado (Moebius Syndrome)

Unique Smiles: The Facial Paralysis Podcast

Play Episode Listen Later Jan 7, 2020 24:14


In Episode 12, we talk to Steven Maldonado who was born with facial paralysis as a result of Moebius Syndrome. We discuss what is Moebius, growing up with a facial difference, bullying, social situations and dating, and finding acceptance. We also discuss Steven's involvement with the Moebius Syndrome Foundation, and some upcoming events.    All episodes now available on YouTube: https://www.youtube.com/channel/UC8-mx9TaB1Crol2vlMjHB5Q   If you have any questions/comments about the podcast please comment below or contact us at:  CONNECT WITH US! https://www.facebook.com/Unique-Smiles-Podcast-168413050468091/ https://twitter.com/UniqueSmilesPod Email: UniqueSmilesPodcast@gmail.com   A big THANK YOU to our sponsors: http://facialparalysisfoundation.org/  and    https://www.risephysicaltherapy.com/   Also, a big THANK YOU to Wes Hutchinson for allowing the use of his beautiful song, "Summer Love" for the podcast. You can check Wes' music at https://weshutchinson.com/  

Inside Out by Sean Barnes
Social Anxiety and Surgeries with Meghan

Inside Out by Sean Barnes

Play Episode Listen Later Sep 23, 2019 26:19


I sit down and chat with Meghan about Moebius Syndrome and her experience growing up. Meghan explains her surgeries and how Moebius Syndrome has played a part in her life later on as well. Enjoy :)

social anxiety surgeries moebius syndrome
Inside Out by Sean Barnes
My Speech To A School in Toronto

Inside Out by Sean Barnes

Play Episode Listen Later Aug 27, 2019 37:52


The fulfilling thing I’ve ever done was speak in front of a school in Toronto about Moebius Syndrome, my upbringing, how to treat others and why adversity is your biggest asset.

school toronto speech moebius syndrome
The Compassionate Leadership Interview
Chris Hill, empowering young people

The Compassionate Leadership Interview

Play Episode Listen Later Aug 15, 2019 23:06


In this show, Chris Whitehead turns the tables on Chris Hill. Chris regularly interviews young people in a ‘Dragons' Den' environment in his role as CEO of Element Society. Element Society is a charity that “empowers young people to make a positive change in their communities.” Over 2,700 young people have participated in the programme since its inception six years ago. Element Society facilitates young people to tackle social issues that the young people believe are important. At the moment those issues include mental health, knife crime, and community cohesion. By way of example, the young people have designed a peer-to-peer support project on “how to be a friend to someone with mental health problems” that has been delivered to 2,000 teenagers across Sheffield. They assembled a hard-hitting video from mobile phone footage to counter child sexual exploitation that has been adopted by the NSPCC at a national level. The teenagers involved spoke at the NSPCSS ‘red carpet' event about how they researched and built the video. Making use of his business background Chris has secured funding for Element Society from the National Citizens' Service Trust, the English Football League, the People's Postcode Lottery, The National Lottery Fund and also Sheffield organisations such as Westfield Health. As CEO Chris does everything from strategy, through governance, to “hoovering and mopping.” He has 10 in his core team, 50 in his delivery team (working on a sessional basis), and 400-500 young people on the programme every year. By the end of summer 2019 Elements Society will have delivered 150,000 volunteer hours in Sheffield. Chris's key leadership principle is to act as a facilitator, recognising that his young volunteers are “closer to the issues than I ever will be.” The charity has a youth board that helps shape the strategy which is then shared with the volunteers, who in turn are empowered to design initiatives that fits with the strategy. Chris's involvement in the voluntary sector started in his undergraduate years at Newcastle University. His masters at Sheffield concerned the measurement of poverty in the UK. On leaving university he became a consultant in the youth and health sector, then a consultant to social enterprises. Element Society arose from a desire to fill the gaps he had observed during his early career. Chris has drawn his inspiration from local business coach Jill White, who assisted him initially as a business mentor, and local businesswoman Faye Smith. He advises leaders in a similar situation to “look locally” when it comes to advice and inspiration. One of the highlights of his career is putting a care plan in place for Jack Marshall, a sufferer from Moebius Syndrome, in order to enable him to participate in the Element Society programme. Jack went on to win the Stephen Sutton Award at the Radio One Teen Awards for his fundraising efforts. He was named Law Student of the Year at his sixth form college and has now made it onto a law degree course. For Chris, self-care is about maintaining relationships and spending time with friends and family. His goals for the future include providing more services for young people with special educational needs or disabilities, and creating a platform for youth voice in Sheffield, a vehicle that permits them to have a stronger influence on local decisions. His advice to up and coming third sector leaders is to learn to say no. You need to develop the ability to prioritise and delegate. His recommended Youtube video is Simon Sinek's “Start with Why.” At Element Society they have developed a Theory of Change, which explains why they do what they do, how they do it and what they aim to achieve through it. It's Chris's roadmap as Chief Executive. Julie McEver of Local Partnerships helped Elements Society develop this.

Experts Connect (with HelpMeSara & guest)
Learning To Love Your Crooked Self

Experts Connect (with HelpMeSara & guest)

Play Episode Listen Later Jan 21, 2019 31:53


In conversation with Katharine Love as she candidly shares her journey from self loathing to self loving. Over the course of this podcast, you will learn more about: Katharine's early beginnings and how she was shaped by her family's response being "different" What the word "crooked" means to her How her diagnosis of Moebius Syndrome changed the path she was on What else contributed towards her self loathing and how this manifested itself When and how she managed to take "control" of her life and see herself through a different lens Positive changes have taken place over the past few years Resources and inspiration so that you too can go from self loathing at the worst to self loving at the best  

Unique Smiles: The Facial Paralysis Podcast
Episode 04: Matthew Joffe - Vice President of the Moebius Syndrome Foundation

Unique Smiles: The Facial Paralysis Podcast

Play Episode Listen Later Mar 15, 2018 32:04


In Episode 4 we talk to Matthew Joffe, the Vice President of the Moebius Syndrome Foundation. We discuss what exactly is Moebius Syndrome, challenges of living with Moebius Syndrome, including: school, landing employment, and social settings. We also discuss the benefits of therapy, and what parents can do when dealing with a child with Moebius Syndrome. Matthew also tells us about his love for acting and recalls Opening Night of the first play he acted in. For more information about Moebius Syndrome, please visit: http://moebiussyndrome.org/    Don't forget to subscribe here or on iTunes: https://itunes.apple.com/us/podcast/unique-smiles-podcast/id1352822884   If you have any questions/comments about the podcast please comment below or contact us at:  CONNECT WITH US! https://www.facebook.com/Unique-Smiles-Podcast-168413050468091/ https://twitter.com/UniqueSmilesPod Email: UniqueSmilesPodcast@gmail.com   A big THANK YOU to our sponsors: http://facialparalysisfoundation.org/  and    https://www.risephysicaltherapy.com/   Also, a big THANK YOU to Wes Hutchinson for allowing the use of his beautiful song, "Summer Love" for the podcast. You can check Wes' music at https://weshutchinson.com/  

The One in a Million Baby
Episode 29: Pierce and Nicole - life with Moebius Syndrome

The One in a Million Baby

Play Episode Listen Later Jan 23, 2018 55:50


At 20 weeks pregnant, doctors told Nicole and her husband Ben that something was wrong with their child's brain. When Pierce was born he struggled to breath, and at six weeks he had a tracheostomy. But it wasn't until Nicole googled facial paralysis when Pierce was 6 months old that they discovered he had Moebius Syndrome. This episode, released for the 24th of January, Moebius Syndrome Awareness Day, tells their story. 

moebius syndrome
Uehiro Centre for Practical Ethics
Folk Psychology, the Reactive Attitudes and Responsibility

Uehiro Centre for Practical Ethics

Play Episode Listen Later May 30, 2013 52:04


In this talk we first argue that the reactive attitudes originate in very fast non-voluntary processes involving constant facial feedback. In the second part we examine the supposed constitutive relation between the reactive attitudes and responsibility. This talk explores the connections between the folk psychological project of interpretation, the reactive attitudes and responsibility. The first section argues that the reactive attitudes originate in very fast and to a significant extent, non-voluntary processes involving constant facial feedback. These processes allow for smooth interaction between participants and are important to the interpretive practices that ground intimate relationships as well as to a great many less intense interactions. We will examine cases of facial paralysis (Moebius Syndrome and Botox studies) to support the argument that when these processes are interrupted or impaired, the interpretive project breaks down and social relationships suffer. But do failures of interpretation lead, as Strawson suggests, to the suspension of the reactive attitudes relevant to responsibility assessments? We suggest that in many important instances they do not. Here we consider the cases of children who murder, alien cultures, and psychopaths. In the second part we examine the supposed constitutive relation between the reactive attitudes and responsibility.