Podcasts about Spinal muscular atrophy

For Jamie Hubble, a physical therapist in the Virtua early intervention program, working with children aged zero to three isn't just a job—it's a calling. In this role, she visits families in their homes, empowering parents with strategies to help their little ones learn to crawl, walk, and explore their world.   But one little girl, Penny, captured not just Jamie's professional expertise, but her heart. Penny's diagnosis of spinal muscular atrophy (SMA) presented unique challenges. Undeterred, Jamie and her husband, Kyle, embarked on a mission to find alternative ways to support Penny's development. What began as dedicated therapy evolved into an undeniable bond, culminating in their decision to adopt Penny. Today, Penny is a thriving, vibrant child, a testament to their love and commitment.   Jamie's story beautifully illustrates how a therapist's dedication can extend far beyond clinical care, blossoming into the creation of a cherished family.

This week sees Rare Diseases Day 2025 and to mark the moment, Steve and James speak with SMA UK boss Giles Lomax about spinal muscular atrophy and how we have the power to save lives. The pair also consider what is happening with the Government's Ten Year Plan, a worrying new piece of research from CRUK and look ahead to the NHS Winter crisis of 2026 - discuss! You can get in touch with the team via podcast@stevebrine.com or find us on our social media channels.Note: Steve has worked in an advisory role with organisations who have an interest in both SMA and newborn screening, but the opinions expressed in this podcast which he presents are his own. Hosted on Acast. See acast.com/privacy for more information.

Local woman Charlotte Hedges speaks to Patricia about how her family have been forced to pack up and move from Kanturk to Dublin, to be closer to Temple Street Childrens Hospital to support their son Rí, who has Spinal Muscular Atrophy. Hosted on Acast. See acast.com/privacy for more information.

Patricia speaks to local woman Charlotte Hedges, who has had to move from North Cork to Dublin to be closer to Temple Street Hospital for her son Rí, who has Spinal Muscular Atrophy. Majella Beatie from Care Champions talks to us about the urgent need to improve nursing home conditions, and Cork woman and TV presenter Elaine Crowley speaks to Patricia about how she feels ahead of appearing on the upcoming series of Dancing With The Stars. Donagh Good from The Good Fish Company talks about why more people should consider eating fish this Christmas, and Peter Dowdall answers your gardening and gifting questions! Hosted on Acast. See acast.com/privacy for more information.

WELCOME TO THE MWSA PODCAST FOR WEDNESDAY, NOV 13th Have you discussed your long-term care wishes with your loved ones? It's a ‘not so easy' conversation, that needs to be had – but how do you even ‘open' up a dialogue - on such a difficult subject? We get some tips from Laurel Gillespie – CEO of the ‘Canadian Hospice Palliative Care Association. Next have you seen more mustaches on the streets of Calgary this month? “Movember” is in full swing - an initiative aimed at helping men discuss mental health - and have difficult conversations about issues like testicular cancer. We catch up with our MWSA Producer – Reece Schafer – who shares his personal experience navigating his own testicular cancer diagnosis – and recovery. And finally – this week The Westley Hotel and the “Love for Lewiston Foundation” will host the 3rd Annual “Lemon Light Up” Gala. We hear the emotional story behind the event from Jessica Olstad – who lost her son, Lewiston back in 2017 to Spinal Muscular Atrophy.

Bismillah, Saat anak kedua mereka lahir, momen itu membawa kebahagiaan di tengah keluarga kecil mereka. Sebuah kelahiran yang dinanti, setelah sebelumnya sang istri sempat keguguran dan trauma.Untuk sang buah hati yang baru lahir, nama indah, pakaian, dan perlengkapan bayi lainnya telah disiapkan. Namun, ternyata ujian yang lebih besar menanti.Sang anak didiagnosis mengalami Spinal Muscular Atrophy tipe satu. Sempat ada beliau dan istri terpukul karena melihat kondisi bayinya yang tidak bisa bergerak, tidak menangis, lemah otot paru-paru, sampai harus butuh bantuan ventilator untuk bernafas. Di tengah keterpurukan hati, Allah kuatkan mereka dengan caraNya.Simak cerita lengkap beliau dan istri dalam kisah, “Ujian Cinta Itu Datang Melalui Sang Buah Hati”.Jazaakumullahu khaira telah berjuang bersama beliau melalui program “Laa Ba'sa Thahuurun , Insyaa Allah Saudaraku”. Semoga Allah memberkahi kita bersama.#SemuaButuhBersedekahIkuti Muhajir Project PeduliFacebook, Instagram, Youtube:@muhajirprojectpeduli

Send us a textJoin us on this episode of the Living the Dream podcast with Curveball as we sit down with indie movie producer Bill Mikita. Discover the fascinating journey behind his film "Chasing 3000," inspired by his personal life and the legendary baseball player Roberto Clemente. Bill shares the challenges and triumphs of making the movie, the incredible cast that brought it to life, and the impactful stories that baseball can tell. We also dive into his upcoming project "Brewer's Boy," a story of an extraordinary high school baseball team during the Watts riots, and the inspiring legacy of Chet Brewer. Don't miss this inspiring conversation about passion, perseverance, and the power of storytelling through film.Want to be a guest on Living the Dream with Curveball? Send Curtis Jackson a message on PodMatch, here: https://www.podmatch.com/hostdetailpreview/1628631536976x919760049303001600

The Future of Joy | Courage Chronicles | Calgary Business In the final episode of The Courage Chronicles, Connor Curran, co-owner of Local Laundry, sits down with his friend, Jessica Janzen, to discuss the future of joy and resilience. Connor and Jessica also dive into the importance of staying present, building a solid foundation, and finding joy in everyday moments. This heartfelt episode highlights the power of determination, self-awareness, and the pursuit of happiness, making it an inspiring watch for anyone seeking motivation and encouragement. Tune in to the last installment of The Courage Chronicles to gain insights, laughter, and a dose of positivity. #CourageChronices #yycbusiness #LocalLaundry #Calgary #LoveForLewiston A bit about our Guest: Jessica is the Founder & Executive Director for the Love for Lewiston Foundation which exists to create awareness, bring joyful experiences spreading love and directing money to local families, and ultimately raising funds focused on treatments and finding a cure for Spinal Muscular Atrophy through SMA Research and The Alberta Children's Hospital Foundation. She is also the CEO of Jessica Janzen Inc. where she speaks, coaches and transforms people who are are navigating uncertainty, grief, and how to pursue and bring joy in the midst of the unknown. It is really hard work. You can connect with Jessica on LinkedIn at: https://www.linkedin.com/in/jessicajanzen or at http://www.jessicajanzen.ca/ Connor Curran is the founder and co-owner behind Local Laundry, a Canadian-made clothing company with a mission to make a positive impact on both people and the planet. He shares his dedication to using business as a force for good through public speaking, and his work to connect his community. Countless others have already been inspired to follow in Connor's footsteps and strive for positive change in their own lives and communities. Connect with Connor on LinkedIn at: https://www.linkedin.com/in/connor-curran Courage Chronicles shares inspiring stories of business success, showcasing dedicated local talent. It is a celebration of Calgary's community spirit, highlighting the journeys of these intrepid professionals. From artists and chefs to entrepreneurs and educators, we delve into their personal stories of courage, perseverance, and passion. Our aim is to inspire, educate, and foster a sense of community among our viewers. Courage Chronicles is also the ideal choice to showcase your contributions to the community, inspire others to get involved, promote your business and: -Reach a global audience via the YYC Business website and the MegaPixxMedia YouTube channel. -Gain additional viewers of the Courage Chronicles episodes through free publication on YYC Calgary Business social media platforms. -Download the Courage Chronicles episode to your personal and company social media pages. Episodes are also available in podcast format, and you can listen to them on Spotify, Apple Podcast, and Google Podcasts. Filmed and edited by ENTA Solutions https://www.entasolutions.org

Subscriber-only episodeOn today's PoM Podcast episode, I got the opportunity to speak with Kevan Chandler of “We Carry Kevan.” Kevan Chandler was born with Spinal Muscular Atrophy and has spent the entirety of his life overcoming extraordinary challenges. And doing extraordinary things. How? Well, he sees possibilities and not limitations. And he has an extraordinary community of friends.For example, a few years ago, when Kevan dreamt of climbing mountains and seeing Europe, these friends just said 'yes'. Ditch the wheelchair, they said. We'll carry you across Europe. So, they built a special backpack, and they did.Wanting others to be able to experience what he had, Kevan came home and launched a non-profit to create more of the backpacks and provide them to people in need all over the world. And what I'm hoping is that you'll help me connect people with his story and non-profit, 'We Carry Kevan'.To learn more: https://wecarrykevan.org/To get more PoM Podcast content and join a global community of men who help support PoM join The Herd: https://www.thepursuitofmanliness.com/join-the-herd Join Tribe XV by securing your spot today: https://www.thepursuitofmanliness.com/gear/p/tribe-xv Build your own local Tribe with Tribe Builder: https://www.thepursuitofmanliness.com/gear/p/tribe-builderRegister for our 2025 Fall Men's Retreat: https://www.thepursuitofmanliness.com/gear/p/2025-mens-retreatThis podcast is sponsored by Dark Water Woodwork. Dark Water Woodwork is offering a discount code exclusively for the podcast listeners. Use the discount code "PSALM824" to save 15% off of your next beard oil purchase.  https://www.darkwaterkc.com#Podcast #ChristianMen #IronSharpensIron #Interview 

On today's PoM Podcast episode, I got the opportunity to speak with Kevan Chandler of “We Carry Kevan.” Kevan Chandler was born with Spinal Muscular Atrophy and has spent the entirety of his life overcoming extraordinary challenges. And doing extraordinary things. How? Well, he sees possibilities and not limitations. And he has an extraordinary community of friends.For example, a few years ago, when Kevan dreamt of climbing mountains and seeing Europe, these friends just said 'yes'. Ditch the wheelchair, they said. We'll carry you across Europe. So, they built a special backpack, and they did.Wanting others to be able to experience what he had, Kevan came home and launched a non-profit to create more of the backpacks and provide them to people in need all over the world. And what I'm hoping is that you'll help me connect people with his story and non-profit, 'We Carry Kevan'.To learn more: https://wecarrykevan.org/To get more PoM Podcast content and join a global community of men who help support PoM join The Herd: https://www.thepursuitofmanliness.com/join-the-herd Join Tribe XV by securing your spot today: https://www.thepursuitofmanliness.com/gear/p/tribe-xv Build your own local Tribe with Tribe Builder: https://www.thepursuitofmanliness.com/gear/p/tribe-builderRegister for our 2025 Fall Men's Retreat: https://www.thepursuitofmanliness.com/gear/p/2025-mens-retreatThis podcast is sponsored by Dark Water Woodwork. Dark Water Woodwork is offering a discount code exclusively for the podcast listeners. Use the discount code "PSALM824" to save 15% off of your next beard oil purchase.  https://www.darkwaterkc.com#Podcast #ChristianMen #IronSharpensIron #Interview Support the show

The Courage To Keep Going | Courage Chronicles | Calgary Business In this powerful episode of Courage Chronicles, host Connor Curran sits down with Jessica Janzen, a Calgary-based advocate and entrepreneur, to talk about relentless courage and the drive to never take "no" for an answer. Jessica shares her deeply personal journey of founding a charity in honor of her late son, Lewiston, and the years of hard work that led to changing newborn screening policies across Canada, saving children's lives. Tune in for this heartening conversation on how courage, resilience, and determination can lead to remarkable impact. Don't miss out! Watch now and discover how Jessica's work continues to leave a lasting mark on Calgary and beyond. Follow Courage Chronicles for more inspiring stories of perseverance. #CourageChronices #yycbusiness #LocalLaundry #Calgary #LoveForLewiston A bit about our Guest: Jessica is the Founder & Executive Director for the Love for Lewiston Foundation which exists to create awareness, bring joyful experiences spreading love and directing money to local families, and ultimately raising funds focused on treatments and finding a cure for Spinal Muscular Atrophy through SMA Research and The Alberta Children's Hospital Foundation. She is also the CEO of Jessica Janzen Inc. where she speaks, coaches and transforms people who are are navigating uncertainty, grief, and how to pursue and bring joy in the midst of the unknown. It is really hard work. You can connect with Jessica on LinkedIn at: https://www.linkedin.com/in/jessicajanzen or at http://www.jessicajanzen.ca/ Connor Curran is the founder and co-owner behind Local Laundry, a Canadian-made clothing company with a mission to make a positive impact on both people and the planet. He shares his dedication to using business as a force for good through public speaking, and his work to connect his community. Countless others have already been inspired to follow in Connor's footsteps and strive for positive change in their own lives and communities. Connect with Connor on LinkedIn at: https://www.linkedin.com/in/connor-curran Courage Chronicles shares inspiring stories of business success, showcasing dedicated local talent. It is a celebration of Calgary's community spirit, highlighting the journeys of these intrepid professionals. From artists and chefs to entrepreneurs and educators, we delve into their personal stories of courage, perseverance, and passion. Our aim is to inspire, educate, and foster a sense of community among our viewers. Courage Chronicles is also the ideal choice to showcase your contributions to the community, inspire others to get involved, promote your business and: -Reach a global audience via the YYC Business website and the MegaPixxMedia YouTube channel. -Gain additional viewers of the Courage Chronicles episodes through free publication on YYC Calgary Business social media platforms. -Download the Courage Chronicles episode to your personal and company social media pages. Episodes are also available in podcast format, and you can listen to them on Spotify, Apple Podcast, and Google Podcasts. Filmed and edited by ENTA Solutions https://www.entasolutions.org

The Joys of Calgary Community | Courage Chronicles | Calgary Business In this episode of Courage Chronicles, host Connor Curran, co-owner of Local Laundry, sits down with entrepreneur and community leader Jessica Janzen. Together, they explore the unique aspects of Calgary that have shaped Jessica's life and career. From the city's tight-knit community to its thriving food scene and proximity to nature, Jessica shares her deep appreciation for the place she now calls home. The conversation touches on how Calgary's spirit of collaboration, resilience, and opportunity has impacted her personal and professional journey. Join us as we dive into finding joy in everyday challenges, building connections, and creating success in one of Canada's most vibrant cities. Watch now to discover how Calgary fosters growth, community, and courage. Stay tuned for the next episode where we discuss a pivotal moment in Jessica's journey! #CourageChronices #yycbusiness #LocalLaundry #Calgary #LoveForLewiston A bit about our Guest: Jessica is the Founder & Executive Director for the Love for Lewiston Foundation which exists to create awareness, bring joyful experiences spreading love and directing money to local families, and ultimately raising funds focused on treatments and finding a cure for Spinal Muscular Atrophy through SMA Research and The Alberta Children's Hospital Foundation. She is also the CEO of Jessica Janzen Inc. where she speaks, coaches and transforms people who are are navigating uncertainty, grief, and how to pursue and bring joy in the midst of the unknown. It is really hard work. You can connect with Jessica on LinkedIn at: https://www.linkedin.com/in/jessicajanzen or at http://www.jessicajanzen.ca/ Connor Curran is the founder and co-owner behind Local Laundry, a Canadian-made clothing company with a mission to make a positive impact on both people and the planet. He shares his dedication to using business as a force for good through public speaking, and his work to connect his community. Countless others have already been inspired to follow in Connor's footsteps and strive for positive change in their own lives and communities. Connect with Connor on LinkedIn at: https://www.linkedin.com/in/connor-curran Courage Chronicles shares inspiring stories of business success, showcasing dedicated local talent. It is a celebration of Calgary's community spirit, highlighting the journeys of these intrepid professionals. From artists and chefs to entrepreneurs and educators, we delve into their personal stories of courage, perseverance, and passion. Our aim is to inspire, educate, and foster a sense of community among our viewers. Courage Chronicles is also the ideal choice to showcase your contributions to the community, inspire others to get involved, promote your business and: -Reach a global audience via the YYC Business website and the MegaPixxMedia YouTube channel. -Gain additional viewers of the Courage Chronicles episodes through free publication on YYC Calgary Business social media platforms. -Download the Courage Chronicles episode to your personal and company social media pages. Episodes are also available in podcast format, and you can listen to them on Spotify, Apple Podcast, and Google Podcasts. Filmed and edited by ENTA Solutions https://www.entasolutions.org

Send us a textIn this compelling episode of Living the Dream with Curveball, host Curveball is joined by Toby Mildon, a certified executive coach and diversity and inclusion expert. Diagnosed with spinal muscular atrophy, Toby has faced various forms of discrimination, which fueled his passion for creating inclusive environments in both the business world and everyday life.Toby shares his journey from working in IT project management to becoming a diversity and inclusion manager at prominent organizations like the BBC and Deloitte. Learn about his personal experiences with prejudice and exclusion, and how inclusive managers helped him thrive. Toby also discusses the significant advancements in treatments for spinal muscular atrophy and how they are changing lives.Dive deep into the benefits of diversity and inclusion for brand innovation and productivity, and discover Toby's frameworks for implementing effective diversity and inclusion strategies in the workplace. Toby also talks about his books, "Inclusive Growth" and "Building Inclusivity," which offer invaluable insights and practical steps for fostering inclusive cultures.Don't miss Toby's advice for leaders looking to champion diversity and inclusion in their organizations, and hear about the exciting projects he's working on, including AI-driven tools for analyzing diversity data.If you would like to be a podcast guest please sign up at podmatch.com

In the third episode of this three-part series, Dr. Stacey Clardy and Dr. Mary Schroth discuss the critical objective of advancing the quality of life for individuals with SMA in the coming years. Show reference:  https://www.neurology.org/doi/full/10.1212/CPJ.0000000000200310

Pippa speaks to Stephen Gawking, the Nuclear Lyricist, who is severely disabled with Spinal Muscular Atrophy, and uses his music to inspire others. His new song  'Remember the Dream' was inspired by our sports stars and the resilience of our Rainbow Nation. Link to the song: https://open.spotify.com/track/384W97017nYF7b6cwbpqBy  See omnystudio.com/listener for privacy information.

“Hola, mi nombre es Nohemy y hoy seré su intérprete”, or “Hello, my name is Nohemy and I'll be your interpreter today”. That's what Nohemy says to her clients as an interpreter for her local court system. Nohemy 1 On this week's program, she will be sharing with us how she found this career path despite living with a rare neuromuscular condition called Spinal Muscular Atrophy. We will also be discussing how it has affected her ability to work over her lengthy and diverse career given the fact that SMA is a degenerative disease, which until recently, had no treatment. If you'd like to learn more about SMA or donate to research funds, you can do so here. This program was produced and hosted by Dominick Trevethan with editing assistance by Denny Daughters. Nohemy 2 The post Interpreting Life With SMA – Pushing Limits – September 6, 2024 appeared first on KPFA.

In the second episode of this three-part series, Dr. Stacey Clardy and Dr. Mary Schroth discuss the currently available treatments for spinal muscular atrophy.  Show reference:  https://www.neurology.org/doi/full/10.1212/CPJ.0000000000200310

In the first episode of this three-part series, Dr. Stacey Clardy and Dr. Mary Schroth discuss the most common types of spinal muscular atrophy. Show reference: https://www.neurology.org/doi/full/10.1212/CPJ.0000000000200310 

Dr. Stacey Clardy talks with Dr. Mary Schroth about the revised SMA recommendations, treatment options available, treatment outcomes, and the future of SMA research and care. Read the related article in Neurology: Clinical Practice.  Disclosures can be found at Neurology.org.

"Dying is like falling asleep. You don't realize it until you wake up." Jordon SchroeterSpeaker, Advocate, Comic, Pastor (with a Masters), and Award-Winning Film Maker Jordan Schroeter wasn't supposed to live past the age of 2 years old. Here is in, in his third decade - from an electric wheelchair with all the spunk of anyone's new best pal. Schroeter has Spinal Muscular Atrophy, Type 1. He transparently shares what it means to continue to lose muscle mass and usage and the choice of finding moments to celebrate.He says his severe disability is not the source of issues. Listen to our chat to learn what is the source, and maybe you'll resonate with much of what he has to say.  I know I did. You'll laugh as hard as I did when he answers my infamous question: Do you have a prank or dare story to share?If you want a speaker who truly can inspire, motivate, affect the group, and evoke some laughter, seek Jordan Schroeter. Jordan can be found on most social media, and at Jordan River of Life Coaching & Speaking.Search for his TEDxOshKosh talk, it was quite incredible and he shares his favorite pick up line, too!  (Of course it's also in this episode because it's a hoot). 

In this week's episode I sat down with Tilly Griffiths. Tilly is a two-time Stanford graduate from the United Kingdom, recently completing her Master's degree in Communication with an emphasis on data journalism during which she focused on telling impactful, data-driven stories about the disabled experience. As a full-time power wheelchair user living with Spinal Muscular Atrophy, she also dedicated much of her time outside of the classroom to building community on campus for her fellow disabled students. We discuss the cultural shift about disability on college campuses, the balance between being in and being defined by our community, making the decision to never settle or stay put and much, much more. Follow Tilly: Instagram: @itsmetillyg Follow Me: Instagram: @jill_ilana , @alwayslookingup.podcast TikTok: @jillian_ilana Website: https://www.jillianilana.com Email: alwayslookingup227@gmail.com This episode was edited and produced by Ben Curwin.

In its most severe forms, spinal muscular atrophy (SMA) was once thought to be unavoidably terminal. But recent developments are allowing those with the disorder to live longer, healthier lives, and today's guest says this means a greater need for speech-language pathologists' services.SLP Katlyn McGrattan (University of Minnesota; Masonic Children's Hospital) says advances in treating SMA essentially created a new condition. She explains the role SLPs play in treating feeding and swallowing issues, dysarthria, and other such conditions seen in this emerging patient population.Later in the episode, hear from the mother of a son with SMA. She shares her family's experience.Learn More:ASHA Voices: Exploring Caregiver-Provider InteractionsDysphagia Phenotypes in Spinal Muscular Atrophy: The Past, Present, and Promise for the FutureASHA Evidence Map: Spinal Muscular AtrophyTranscript

CME credits: 1.00 Valid until: 10-07-2025 Claim your CME credit at https://reachmd.com/programs/cme/spinal-muscular-atrophy-optimizing-the-management-of-adults-in-the-era-of-disease-modifying-therapies/26352/ Explore this on-demand webcast for an in-depth expert presentation and case discussion. This educational initiative is designed to help neurologists enhance their clinical approach by providing individualized, evidence-based care for adult SMA patients. Gain insights into the latest treatment options, safety and efficacy data, and effective patient communication strategies. Equip yourself with the knowledge to meet the unique clinical and psychosocial needs of adults with SMA and improve patient outcomes.=

Child Neurology advancements at UK HealthCare, with specific focus on work at Kentucky Neuroscience Institute to address Spinal Muscular Atrophy and Duchenne's Muscular Distrophy

Join your host Sophia as she interviews Nelly on her two births and the diagnosis of Spinal Muscular Atrophy for both of her children. They discuss topics including home birth, hospital birth, posterior presentation, cesarean, VBAC, kidney infection, Newborn Screening, geriatric pregnancy (advanced maternal age), and tandem breastfeeding. Nelly is a 2 under 2 mom living off-grid with her husband and a slightly chaotic amount of animals  in Cazadero CA. Learning to work in harmony with and navigate the medical system through two wildly different births and the diagnosis and treatment of both her children who have Spinal Muscular Atrophy- a rare degenerative genetic disease that affects about 1 in 10,000 births. She is passionate about spreading awareness of the disease, treatment, and talking about the importance of newborn screening.  Recommendations by Nelly: •Business of Being Born documentary Connect with Nelly: •IG: @hughescandoit Listen here: IG: linktree in bio FB: @sophiabirth @bayareahomebirth @bornwildmidwifery Stay Wild

As part of the 2024 Developmental Disabilities Conference, Dr. Peter Kang, Professor of Genetics at the University of Minnesota, presents a detailed summary of recent advances in gene therapy for children with neuromuscular disorders, specifically Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, and Pompe Disease. He uses case studies to demonstrate diagnostic dilemmas, intricacies of developing and delivering treatment, and the importance of shared decision making about therapies with families. Series: "Developmental Disabilities Update" [Health and Medicine] [Show ID: 39747]

As part of the 2024 Developmental Disabilities Conference, Dr. Peter Kang, Professor of Genetics at the University of Minnesota, presents a detailed summary of recent advances in gene therapy for children with neuromuscular disorders, specifically Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, and Pompe Disease. He uses case studies to demonstrate diagnostic dilemmas, intricacies of developing and delivering treatment, and the importance of shared decision making about therapies with families. Series: "Developmental Disabilities Update" [Health and Medicine] [Show ID: 39747]

As part of the 2024 Developmental Disabilities Conference, Dr. Peter Kang, Professor of Genetics at the University of Minnesota, presents a detailed summary of recent advances in gene therapy for children with neuromuscular disorders, specifically Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, and Pompe Disease. He uses case studies to demonstrate diagnostic dilemmas, intricacies of developing and delivering treatment, and the importance of shared decision making about therapies with families. Series: "Developmental Disabilities Update" [Health and Medicine] [Show ID: 39747]

From a grim diagnosis to rolling the red carpet, Kathryn Hicks has fought the battle with Spinal Muscular Atrophy or SMA with dignity and grace. Being crowned as Miss Wheelchair South Carolina, writing and publishing her first book and competing for the title of Miss Wheelchair America allows Kathryn's voice in the disability community to be heard loud and proud as she takes the stage to show awareness for her disability and tell her story. You can follow Kathryn here: https://linktr.ee/camochick202

Adrion Garcia & Bella Gonzalez Love is love, whether you live with a disability or not. However, those in interabled relationships face unique challenges that stem from within the relationship as well as from outside factors. These challenges can include finding a balance between needing care and being a reliable partner, as well as dealing with the financial limitations that governmental programs such as social security place on married couples. In this program, three people with disabilities discuss their experiences with dating, intimacy, marriage and much more. Denny Daughters We talk to Denny Daughters, one of the Pushing Limits' producers, about the unique challenges of being a blind man married to a sighted woman. Genevieve Werner Genevieve Werner shares her high school (and beyond) dating experiences while living with Spinal Muscular Atrophy.  And, she details the difficulties of intimacy for those who require caregivers. Adrion Garcia tells us how he met his fiancé and the changes they've stared down since he became a quadriplegic after a work accident. This episode of Pushing Limits is produced, edited, and hosted by Dominick Trevethan. The post Interabled Relationships – Pushing Limits – April 5, 2024 appeared first on KPFA.

Episode Notes On E358, we go back to our roots and talk about Spinal Muscular Atrophy, sexuality, desire and so much more with our guest, artist and activist, Jessica E. Blinkhorn. She talks candidly about sex and disability in a way that is so refreshing, raw and honest. Enjoy! You can follow Jessica Blinkhorn here: https://www.instagram.com/wheelie_an_artist/ and follow her work with Spankbox here: www.spankbox.atl Episode Sponsors  Clone-A-Willy or Clone-A-Pussy all your own and get 20% off sitewide by using coupon code ANDREWGURZA at Checkout. www.cloneawillycom.  Get 15% off your next purchase of sex toys, books and DVDs by using Coupon code AFTERDARK at checkout when you shop at trans owned and operated sex shop Come As You Are www.comeasyouare.com  Join the Patreon and get the show days early and ad free at www.Patreon.com/disabilityafterdark  This podcast is powered by Pinecast.

Gabriella Garbero is a disability attorney with Spinal Muscular Atrophy who uses a complex wheelchair to be mobile and independent. Gabriella talks about the changes in healthcare that need to be made for people with disabilities. Our country can do better for people with disabilities! You won't want to miss this episode!

Sarah Rodriguez In a world where she could be anything, Sarah Rodriguez became a certified professional dog trainer.  Many would have imposed limitations on her in their minds because Sarah Lives with Spinal Muscular Atrophy. Spinal Muscular Atrophy is a rare neuromuscular disease that affects individuals' control of their voluntary muscles.  She is living proof that individuals living with disabilities are just as capable dog trainers and pet owners as their able-bodied counterparts. On this pet-friendly program, Sarah shares her expertise and experience as owner of Homeschooled Hound, the business she started to teach others how to grow closer with their furry friends. We hear where her passion for animals began and the science behind positive reinforcement. Listen in for Sarah's tips for more accessible pet training and pet caring for those across the spectrum of mobility. Produced and edited by Dominick Trevethan.   This program originally aired in a longer form on the Disability Myth.   TRANSCRIPT ♪ Keep on pushing, keep on pushing ♪ ♪ I've got to keep on pushing, keep on pushing ♪ ♪ I can't stop now ♪ ♪ Move up a little higher, some way, somehow ♪   Dominick Trevethan:  Welcome to Pushing Limits, KPFA's program by and about people with disabilities that airs every Friday at 2:30pm.  My name is Dominick Trevethan and I will be your host today as I am joined by my friend Sarah Rodriguez, owner of Homeschooled Hound. Sarah also lives with spinal muscular atrophy, the same genetic condition that I was born with.  Essentially, we both have extremely limited range of motion, as the motor neurons that control our voluntary muscles lack a protein needed to stay alive and healthy.  As a result of this, our muscles are extremely atrophied, which has led us to live our lives as power wheelchair users.  As you will hopefully come to learn throughout the rest of this program, despite the fact that we look different, we are adaptable and we can accomplish anything that anyone else can.  On today's program, we will be talking about ways in which people with disabilities can adapt to become capable dog trainers and pet owners, despite the misconception that we may struggle to do so. Additionally, this program aired as a one hour-long discussion on my podcast, “The Disability Myth,” which I co-host with my caretaker and best friend, Uriel Ruelas.  If you'd like to learn more about me, Uriel, and our takes on the disabled experience, check us out on Apple Podcasts, Amazon Music, Spotify, and /or YouTube.  Also, be sure to keep up with us on socials, such as Facebook and Instagram @thedisabilitymyth, all one word.  In the meantime, here are Sarah's thoughts on those misconceptions that I mentioned earlier: Sarah Rodriguez:   So I know that a lot of people think like, “Oh, you can't you know make physical contact with your dog if you're like in a wheelchair, so you can't provide comfort and love to them,” or, “You mustn't be able to feed them, because physically it's hard for you to move,” and I think there's so many different ways to meet the dog's needs or any animal's needs for that matter.  And like for example you know I think so many people think like ‘oh I just love to hug my dog' and as a dog trainer I can tell you like most dogs actually hate to be hugged.  Humans love to like hug people and that's how they show affection. But when you look at like dogs together and they're like have a deep bond, they like to curl up next to each other. They'll lick them, they'll like be near them. But it's not like they're like petting each other or hugging them. So even if a dog like sleeps with you or curls up next to you, that's a lot of what they need as far as social and physical contact. And there are definitely ways that we can love on them, give them scritches and just have fun with them, play with them.  As a dog trainer, I do a lot of adaptive training with people.  So I make it accessible for them so if they have a disability, we work around how we can make it possible for them to build a bond through playing and training, how they can feed them in different ways and so I love to be able to do that because it really opens up people's worlds to really help them be the primary caretaker for their dog. Dominick T.:   Now I'm a big fan of dogs.  Throughout the course of my life, I've probably had two different dogs. However, unfortunately due to circumstances, I never had them for very long. Perhaps if I had, I may have become a dog trainer like Sarah. So I asked her where her passion for dog training and animals in general came from. Sarah R.:  Yeah, so I actually started out, we adopted our first dog from the animal shelter when I was five years old. And I actually was very scared of dogs when I was a child. So it's funny because like I went from being afraid of dogs to like absolutely adoring them once I adopted her.  It was just like ‘oh my gosh like I just love this feeling of like just so much non -judgmental unconditional love'.   Like dogs don't have expectations of how we're supposed to look or what we're supposed to be able to do.  They just love you for who you are and so my passion I think for animals really started there.   And then I started volunteering at the animal shelter when I was a young teen and I realized how many people just don't understand their dog or have a bond with them.  And so, they would give them up at the animal shelter.  And so, I really wanted to help people experience the joy of sharing their life with an animal and also to be able to bond with them and understand what they needed through training. Dominick T.:  One of the things that I've come to love most about animals is the fact that they don't have prejudice. They either like you or they don't.  However, it's always been my perception and likely a misconception that dogs and animals in general tend to freak out at the sight of my wheelchair.  Common experiences include lots of barking and running around. So, I asked Sarah, how wheelchair users and those with a mobility device can overcome this. Sarah R.:  My goal is to find what makes the animal want to do things.  And so we pull that reinforcement and we find what motivates them.  And so we're able to get the behaviors that we want.  Not by forcing them, it doesn't take physical force.  In fact, you have a deeper relationship with your dog if you let them choose to want to listen to you. And as far as like the fear of wheelchairs and all of that…  A lot of times… like I mean I work with a bunch of different clients and dogs are always coming, and some are not familiar with like a moving wheelchair.  And so I just try to like stay still in the beginning and let the dog really get comfortable Because sometimes if we move to too much in the beginning, they're like ‘oh my god somebody's like sitting randomly on the sidewalk and they're moving” and it's just like mind -blowing for them. So I think the first thing is just let them kind of come up and sniff you and be able to (and you might want to turn off your wheelchair because I have been driven by animals before).  But it's really surprising how much dogs gain confidence and get information by sniffing.   So by providing them that opportunity to just sniff and kind of go at their own pace without us doing anything like to move too much or anything like that, it really gives them the time.  And so if like you're adopting a dog and they're maybe kind of a little nervous, what you can do is just like toss treats to them or have somebody else toss treats as you move tiny, tiny bits from further away.  So they're never like forced to be too close to something that's scary.  And then we use classical conditioning by making a positive association. So every time he or she moves, I get a treat. So then moving is actually a really good thing. Dominick T.:  The power of understanding motivations is obviously a great tool for any pet owner.  But you might be wondering, what are some more tangible ways that individuals living with disabilities can adapt training methods to make them just a little more accessible. Sarah R.:  Yeah, so I think one of the things like when we talk about luring a dog — so that means like putting a treat in front of their nose and holding it up over their head and going back to get the dog to sit, for example.  Sometimes that can be really hard to do because you have to like bend over and reach the dog way down to the ground.  So you can raise the dog up.  You can put them on a sofa, or on a training platform, or on top of a couple stairs so you can reach them better. I know one thing that I do, even just for people who have a puppy and are teaching loose leash walking, it can be really hard to be reinforcing the dog with treats and you have to like bend all the way to the ground because the puppy is so small.  You can use a little spoon like a wooden spatula or something like that that's longer, you know. Those wooden paint sticks they have at Home Depot, you can smear some peanut butter on the end of that and then give the dog a little lick as they're walking with you.  So there's a lot of ways to make training more adaptable. There's also like, it's called like when you use clickers, you can use like an app on the phone, so it's just like a touch instead, or you can just use a word like ‘yes' to mark a behavior.  You don't have to use a clicker.   So there's a lot of ways to really adapt training, and then of course the automatic treat dispensers, so that you don't have to be physically right there. You can feed the dog from afar. Dominick T.:  A lot of these ideas that Sarah mentions are really innovative, cost effective, and surprisingly simple.  So we continue the conversation by asking her the most innovative adaptation that she has made in regards to her pet training regimen. So surprisingly, that would be a wrapping paper roll.  So I was teaching my dog to walk on a treadmill at the time and I couldn't… every time I tried to toss a treat into the bowl that was on it, it would roll off and then he's like falling off the treadmill.  So I got a wrapping paper — you know the roll inside their wrapping paper?  It's long and so it's like a shoot.  So I was able to drop the treats perfectly in there and then that ended up being a really cool way to actually feed your dog too. If you want to just dump the food into the bowl without it bouncing out everywhere you can use a wrapping paper roll. Dominick T.:  Again, these adaptations are surprisingly simple, and they are easy to implement in the home.  However, just like any other animal, dogs need to go out and socialize with other dogs.  So we asked Sarah if she had any tips on socializing dogs for those with a mobility device, such as a wheelchair. Sarah R.:  Yeah, so I think for somebody with a disability, it's always wise to have someone with you who can help in dangerous situations. For example, I don't walk my dog myself just because sometimes there's loose dogs that come running out of nowhere and I don't want them to hurt my dog.  And it's not like I can just pick him up and go. So I always like to have that little safety net but you would be surprised like how many opportunities there are as far as resources go.  So if you don't have someone who can walk with you, you can find a neighbor or you know, there are so many different ways that you can even hire someone for really cheap to go on walks with you just to keep your dog safe. But as far as socialization, I think it's really important to know the other dog that your dog's going to be socializing with.  So for example, I often tell clients if you're looking for a doggy friend for your dog, you can go to like a dog park, but dog parks can be really dangerous.  So what I tell people is go without your dog and just stand there and watch the dogs play.  And if you see a dog that's playing really, really nicely and proper social behavior, that's really polite, is to see a dog kind of doing 50/50 of like chasing the dog and then being chased.  So you never want to choose a dog that's just like chasing another dog all the time, because that's kind of more of a bully behavior.  So you want to look for friends to your dog who is very kind and gentle with other dogs and plays appropriately.  And then you can ask them, them, “Hey, you know, I have a dog, would you be willing to kind of do like a play date?” And so you can start with like dogs on leash and just kind of parallel walking so that they get used to each other's scent.  They can sniff.   They're still on the move, so it's not confrontational.  And then if something goes wrong, each person already has the leash on their dog.  They can just pull them apart much easier.  So that's a nice way to do introductions.  That's much safer. And then of course, you can do positive reinforcement too.  So, if your dog is really, really shy, just let them see dogs from afar and get treats and then leave. Social interactions should not be very long.  So I would say like under 45 minutes, probably like 30 minutes.  Because if a dog gets tired, either your dog or the other dog, and then one of the dogs wants to play more, that's where we can get into issues where one dog gets aggressive because they're like, ‘Stop already, I'm tired'.  So we want to keep it very short.  And that can also reduce chances of aggression as well. Dominick T.:  At this point in our conversation, I thought to myself, “Wow, Sarah must really help a lot of people”.  But as she details, some people aren't so quick to accept her as a professional. And some even disregard her entirely based off of the fact that she has a visible disability. Sarah R.:  Yeah, so I actually have had some negative experiences. So at first I started out, you know, I would talk to the potential client and answer their questions and set everything up.  And then, you know, okay, so we're going to get together, you know, next Tuesday.  And I would say, and, ‘You know, just to let you know, I'm in a wheelchair'. So I just, you know, either I would ask them ‘Is your house, you know, accessible or other stairs, or can we meet outside?” Or, you know, ‘You're welcome to come to me'. And, you know, I'll get people like, ‘Oh, wow, that's that's interesting you're in a wheelchair.  Yeah, so I'm really gonna have to call you back.  Let me just check with my wife,' or like you know, whatever, and then they would never call back. So then I started kind of testing it.  And I was like, maybe I just won't tell people.  And I'll just tell them I'm doing it at my house and they can come to me.  So I started doing that. And then people would like… I would definitely get more clients.  And then, because they were already there, then they can just, you know, go through the session.  And then they were really happy with the information they got.  And so they would continue coming. But it's crazy, how that thought that like ‘oh they're disabled well how can they possibly help me train my dog?'  And I think it stems a lot from the mentality of like dominance theory and all of that.   That like well you've got to be physically you know keep pushing your dogs to the ground and that kind of thing and use a lot of force and and all of that.   And I think you know that's unfortunately why that contributes to somebody with a disability being a dog trainer, maybe not getting as many clients because people think, ‘Oh, they can't possibly do it'.   And I've actually, I did have one client who did come and she was like, ‘Oh, I didn't expect, you know, someone in a wheelchair'.  And like, she ended up not even paying me for that session and she wasn't even like paying attention.  It was like, she didn't even want to look at me. It was like, it was so horrible. Dominick T.:  You're listening to Pushing Limits, KPFA's program about disability. The voice you just heard was that of Sarah Rodriguez, who is owner of Homeschooled Hound. And today, we've been talking about ways in which people with disabilities can adapt to become capable dog trainers and pet owners — despite the misconception that we may struggle to do so. In my discussion with her, Sarah came off as a very experienced and knowledgeable dog trainer.  Her list of credentials is long and actually includes being a certified professional dog trainer, certified dog behavior consultant, and a Fear Free Professional.  Now just like any other professional, Sarah spent a lot of time earning those credentials through various programs. So we took the time to ask her about her experience as someone studying how to become a certified professional dog trainer with a disability. Sarah R.:  Yeah, so at first, I was trying to find a school that would accommodate me and, surprisingly, a lot of them would not.  You know, I would ask them, you know, ‘I'm in a wheelchair, like can we make adaptions or, you know, I want to be able to train dogs.'  And they weren't interested in helping me.  So there was one that did and it was called the Ethology Institute.  And so that's where I got my first certification as a certified professional dog trainer.  So there was a lot of like book learning and all of that and exams. And then once you complete that, you had to do what was called a proficiency verification exam.  So you had to train your dog like a series of really complicated behaviors.  And I think the only adaption that they had to make for that exam was one of the behaviors was to weave through your legs.  And obviously, I couldn't do that.  So I had my dog weave through cones which is actually harder to teach and so they were totally open to that.  That was fine. And then the handling thing.  In the beginning you're supposed to like have the dog in a heel position and accept handling and I couldn't do the handling.  So somebody else just had to do the handling, which again is harder because if the dog's already trained with you, they're going to be more comfortable with you handling them. And then lastly, some of the behaviors were on leash, and I just opted to do it off leash. So there was no chance of getting tangled up or anything like that.  And again, off leash is harder, because the dog knows they can just wander off if they wanted to.  So they were really accommodating, though, and I was able to pass.  So, so yeah, that was really awesome. And then, so that was the first certification program. And then the second one was the CDBC was like a written exam.  And you had to share case studies and like answer a bunch of questions. So all of that was just like written type stuff to test your knowledge.  And then the Fear Free program was the same.  It was a lot of online stuff. And then you take the test and get your certification. With the CPDT, I also had to put in a certain amount of hours with… I think it was like 300 hours or something like that.  It's been several years now. I can't remember exactly.  But I just did a lot of training with like friends and family's dogs, and then I did shelter dogs as well. So that's how I got the experience, like learning with a variety of dogs. Dominick T.:  Three hundred hours for one credential is no joke, not to mention the other two that she has. And Sarah has obviously put in the time and the effort to reach her level of expertise. However, some people may try to undermine the whole process. Sarah R.:  And it's sad because like there's actually no, there's no like laws against calling yourself a dog trainer.   So people like the dog whisperer or dog daddy can just be like, “Today I'm a dog trainer,” and they have no certification, no like prior learning whatsoever, and they just do their own thing.  So it's really important that whenever you're looking for a trainer to make sure that they've done the work, that they've learned, because you're paying a lot of money for someone just to call themselves a dog trainer.  So you want to make sure that they have certifications.  It's not a lot out there, like as far as information goes about this.  And so, you know, well-meaning pet parents are just wanting to get their dog trained.  And so they go to the nearest, you know, dog trainer they find on Google.  And unfortunately, sometimes that means that the person is not credited. And so you always want to make sure that they have credentials and when they say that they do, you can look them up. You can always make sure too that if you're looking for a dog trainer, you don't want to go for a Board and Train because what happens is a lot of times these kennels will take your dog and charge you a ton of money and the dog stays in a kennel all day and then comes out for training for like an hour or two a day.  So they're really not getting, they're basically staying in a cage stressed out for a majority of the day.  And so if you do board and train, you want to make sure it's a certified trainer who keeps it at their house or they come to you and they're really intensely working with your dog, because you're paying way too much money for your dog to sit in a kennel. Sarah R.:  And always go with your gut if you feel like something a trainer is doing is wrong or harmful to your dog.  Always go with your gut because that usually will not steer you wrong.  And make sure that you know, you advocate for your dog all the time. Dominick T.:  Towards the end of our conversation with Sarah it became obvious to both Uriel and I that she would train practically any animal and she's capable of it too. So, given the bad rap that they get in the media, we asked Sarah about her thoughts on pit bulls and the aggression that they are typically associated with. Sarah R.:  Yeah, so I think it's really a matter of breeding. So unfortunately, there's a lot of people who breed dogs for dog fighting, for example. And so, the genetic line that they're going to choose is going to be dogs who have a predisposition towards being more aggressive, for example.  But even with that being the case, pit bulls were bred to be aggressive to other dogs, never people.  So if a dog has an aggression, it would usually be towards a dog within that breed. But I think they get a bad rep because they are bigger and more powerful dogs.  So if a chihuahua bites somebody, it's not gonna make the news 'cause they made a nick in their big toe.  But if a pit bull bites someone's arm and there's gonna be a bigger mark, the person's gonna be more traumatized 'cause that was just a more scary experience. And that's the case with any larger dog.  But unfortunately, that's what makes the news. And so people hear one story and think, ‘Oh, you know, pit bulls are bad', but that's not the case at all. They're very, very sweet dogs. They have great personalities, and they're not, you know, a dangerous type of dog. It really, again, depends on their upbringing. And their genetics, too, plays a part, so you always want to make sure that you, you know, learn about the dog.  Be careful where you get them from, if you're going to choose a breeder.   But there are plenty of really amazing dogs at the shelter who have been temperament tested.  Or go with a rescue who knows a lot about the dog and they can you know have been in foster care and so they can tell you all about them. Dominick T.:   Feeling enlightened on various fronts regarding dog training and common misconceptions associated with it.  We asked Sarah if she had any advice for individuals that may be hesitant towards taking in a pet regardless of their level of mobility. Sarah R.:  Yeah, I think as far as advice goes, just remember that you're not in it alone. You can really build a support system by using resources. You'd be surprised how many people would love to help. So there are so many people who wish they could have a dog but they don't have the time.  I see it all the time in like the Next Door app.  People want to like walk dogs because they find it really relaxing, or helpful for their depression, or you know they want to get out more but they want to have a reason to.   And so they'll walk your dog for free, you know you can just put it out there and say ‘Hey you know I need somebody to help me walk my dog.'  And see what's available.  Maybe you know there's some people you pay a couple bucks or you know ask a neighbor or a friend.  But I think just remember that you're never alone and that you can seek people to help you and then find resources. As far as ways that you can adapt things, because there is always a way, If you think like ‘Oh I can't play with my dog,' you absolutely can. It just takes a little bit more adoption, but there are ways to use lightweight toys.  You can teach a dog to enjoy fetching an empty water bottle. It doesn't weigh much and it's easier to throw or use an automatic ball launcher, like the iFetch. So there's a lot of different ways that we can make it accessible for us to work with dogs, to train them, to bond with them, to play with them, to feed them — everything needed for their care. Dominick T.:  I love these final sentiments by Sarah because they embodied the idea that people with disabilities, you know, we're not so different that we cannot care for a pet.  Where there is a will, there is a way.  And on that note, we asked Sarah a question that we tend to ask all of our guests on the podcast ‘What do you wish more people understood about individuals living with disabilities?' Sarah R.:  I wish that more people understood that we were just like everybody else and We're just as capable.  I think so often we get overlooked for what we can do.   For example, as a dog trainer, it's like, well, we can't physically handle a Great Dane.  So therefore, you're not capable of training one, but we absolutely are.  Sometimes it takes more creativity like we talked about and different adaptions, but we are capable of making a difference in the world.  And we're just like everybody else. Dominick T.:  Once again, this is Dominick Trevethan, and I would like to give a big thanks to Sarah Rodriguez for her time and her expertise.  Another huge thanks to our engineer Rod Akil and the entire Pushing Limits gang, especially for welcoming a rookie like me onto the team so graciously. And of course, thank you for listening. Pushing Limits is produced, of course, by a collective of people with disabilities.  If you'd like to get in touch with us, contact us by email at pushinglimits, all one word, at kpfa.org. Our website is pushinglimitsradio.org and you can also find us on Facebook at pushinglimitsradio. Additionally, one final thanks to everyone who joined KPFA during the Winter Fund Drive. If you haven't joined us, you have until December 31st to make a tax-deductible donation and pick up a thank you gift.  Simply go to kpfa.org or call 1-800-439-5732. Again, you can go to kpfa.org or call 1-800-439-5732. And be sure to stay tuned for Talk It Out Radio coming up next.   [MUSIC PLAYING] Keep on pushing.  Woo -hoo. Keep on pushing. What I said now? Keep on pushing. Keep on getting ready.  Keep on pushing. It's gonna be alright now. Keep on. The post Dogs & People with Disabilities – Pushing Limits – December 22, 2023 appeared first on KPFA.

You can listen to Rachel share her first birth and postpartum story in episode #51 where she details her daughter Mackenzie's terminal diagnosis of spinal muscular atrophy (SMA). Today she talks about Mackenzie's Mission and the genetic carrier screening that's now covered under Medicare for all couples planning a pregnancy. If you are planning to conceive soon, I highly recommend listening to Rachael's story and request the screening via your GP or Lumi Health. She also talks about her journey to conceiving her two boys, her decision to have an empowering maternal assisted caesarean and the grief and joy, anxiety and hope, love and gratitude of motherhood. Rachael is an incredible woman with a big heart. Her greatest hope is that we are all aware of genetic carrier screening so she has one request: tell everyone about it!  Follow us on Instagram at @australianbirthstories for helpful articles, behind the scenes, and future episodes. --------- Today's episode is proudly brought to you by Kin. If you haven't heard of Kin already, they're a revolutionary women's healthcare brand, devoted to helping you take control of your reproductive health.Whether you're trying to conceive, already pregnant or going through postpartum, Kin's got you covered with a range of products that are evidence-based and recommended by dietitians.Like The Essential Protein to help you meet your protein requirements during pregnancy, and The Postnatal Vitamin to replenish nutrients after giving birth, so you can feel like yourself again.Visit Kin today and use the code ABSKIN15 at the checkout for 15% off the entire fertility product range today.See omnystudio.com/listener for privacy information.

In this Healthed lecture, Dr Rashi Kalra explains the benefits of these tests - "essential carrier screening tests"- Cystic Fibrosis, Spinal Muscular Atrophy, Fragile X, their application, who they are most relevant to, whether or not extra tests might be needed and how best to explain them to your patients.See omnystudio.com/listener for privacy information.

EPISODE 274 - Howard Bell - Infantile Spinal Muscular Atrophy has led to a Yielded LifeHoward BellHoward Bell has lived life sharing the message that physical and emotional limitations do not have to determine identity or purpose. Instead, I have personally developed the lifestyle and belief that our identity and purpose, if well cultivated, can unlock an amazing destiny.At the age of one, Howard was diagnosed with Infantile Spinal Muscular Atrophy. The prognosis was fatal. Doctors told his parents he would probably not live beyond the age of five... at best into his early teens. As people of faith, Howard's parents and family chose to treat him as “normal” and encouraged him to believe he had a divine purpose and that his identity rested in what he believed, not in what others said about him.Now, more than four decades later, Howard has taken his life's story around the world to help encourage and inspire others. Seeing others succeed, is what continues to fan the flames of purpose in his life that is unlocking the destiny in people everywhere.Despite physical challenges, Howard has accomplished many professional and personal goals such as receiving a bachelor's degree from ASU with highest honors. He also went on to receive a his doctorate. He has been appointed by governors and mayors to serve on various community and political boards. He has been a spokesperson for the Easter Seals Society. He has been the Vice President and Chief Operating Officer for various corporations. He is a published author and has been featured on TBN, 700 Club, and several radio programs throughout the United States. He also hosted the “More Than A Conqueror” radio program for four years.Today, Howard travels and speaks to businesses, churches, institutions, schools and at various community organizations throughout the world. His mission is to reach the globe with the message that there are no limits for those who believe.https://www.yieldedlife.org/___http://livingthenextchapter.com/ National Podcast Post Month is celebrating 16 years! Join the 30 days of podcasting fun starting on November 1st! #NaPodPoMoSupport the showAre you looking to hire a podcast editor to do the behind the scenes work for you? Do you want to be a better Podcast Guest?Searching for How To Start a Podcast?Looking for Podcast Tips?Visit HowToPodcast.ca for practical advice, featured guest co-hosts from around the world and a community of podcasters dedicated to your success - join Dave and the entire podcast family at https://howtopodcast.ca/

Is it ever “normal” for infants to cough during feeding? Does it make a difference whether they're breastfed or bottle-fed? What should med SLPs actually understand and implement when it comes to infant feeding? Infant feeding and our role as med SLPs is one of my FAVORITE topics to discuss, and my heart practically did a break dance when I got to sit down with Katlyn McGrattan, PhD, CCC-SLP, to discuss THIS very topic! Katlyn is an SLP and a researcher at the University of Minnesota. She lives, eats, and breathes the world of pediatric feeding and swallowing (seriously, as a hobby, she and her husband are developing a medical device to better diagnose infant feeding goals). Tune in to this week's episode of the Swallow Your Pride Podcast where Katlyn discusses research on infant feeding and swallowing disorders, the importance of understanding the physics behind milk flow, and what med SLPs should understand when it comes to working in this corner of our field! Get the shown notes at: https://syppodcast.com/303 Timestamps The Normal Cough Study (00:02:05) Feeding Metrics of Healthy Term Babies (00:08:08) Comparison of Breastfed and Bottle-fed Infants (00:04:59) Immature Feeding and Stress Cues in Infants (00:09:58) Challenges in Identifying Normal Infant Feeding Behaviors (00:13:31) Hydrostatic Pressure and Milk Flow (00:19:49) Influence of Bottle Nipples on Milk Flow (00:22:44) Global Accessibility of Bottle Nipples (00:25:32) The Bottles and Nipples Dilemma (00:26:26) Research on Infant Swallowing in Spinal Muscular Atrophy (00:29:09) Non-Invasive Method to Evaluate Swallowing Integrity (00:34:32) The need for speech pathologists in neuromuscular clinics (00:35:24) The importance of training in working with pediatric populations (00:36:03) The post 303- What's Considered “Normal” in Infant Feeding: A Discussion with Katlyn McGrattan. appeared first on Swallow Your Pride Podcast.

More Details on this and Other Episodes Join us for an uplifting episode featuring Jessica Janzen, a remarkable woman who transformed grief and loss into a powerful source of inspiration and change. Jessica shares her journey from heartache to hope, revealing how she found purpose after the loss of her son, Lewiston. Through her book "Bring the Joy," Jessica has raised over $1.2 million for a foundation in Lewiston's honor called Love for Lewiston a charity bringing financial support and awareness to Spinal Muscular Atrophy. (SMA) She's a dynamic speaker who helps others navigate life's challenges and believes in finding joy even in the face of chaos and uncertainty. In this episode, Jessica's resilience and faith shine as she talks about her mission, her own struggles, and the importance of living life with intention. You won't want to miss this conversation with a woman who's made an indelible impact, earning accolades like The 2021 Doc Seaman - Generosity of Spirit Award and being named one of Calgary's Top 40 Under 40. Subscribe to stay inspired and informed about Jessica's incredible journey. https://www.instagram.com/thejessicajanzen/ https://www.instagram.com/loveforlewiston/?hl=en jessicajanzen.ca  

In this first installment of our series on rare neurologic diseases, host Jeff Schmidt talks with Kyle Reedy about Spinal Muscular Atrophy (SMA). Kyle discusses the etiology and clinical presentation of this disease, as well as best practices for treating patients living with this rare neuromuscular disease, in light of medical advances that have improved patient prognosis. From using SMA-specific outcome measures to advocate for patients to insurance companies, to designing comprehensive and tailored interventions to optimize function and mobility long term, Kyle delves into the research and interdisciplinary best practices for management of patients with SMA.The Degenerative Diseases Special Interest Group is part of the Academy ofNeurologic Physical Therapy – www.neuroPT.org

Here's your dose of motivation for the week! Listen in to hear how this mom and her family navigated losing their second-born at less than six-months-old and have turned the experience into a perspective shift that has changed the way they live.Laugh, cry and “bring the joy” in this special interview with Jessica Janzen!>>MEET JESSICACONNECT WITH JESSMEET YOUR HOSTLET'S CONNECT

Step into a world beyond comfort zones with host Ginny Yurich, as she engages in a compelling conversation with the remarkable Kevan Chandler from We Carry Kevan. Born with Spinal Muscular Atrophy, Kevan shares his profound journey of conquering fears, surpassing limitations, and venturing into the unknown. Explore how breaking free from the safety of familiarity can lead to transformative experiences and meaningful relationships, epitomizing the strength of human spirit and the beauty of inviting others into our needs and dreams. Discover the extraordinary adventures of the We Carry Kevan mission that spans 40 countries. Tune in and be inspired to carry and be carried in this awe-inspiring exploration of life's greater purpose. For more information and to be part of this incredible journey, visit wecarrykevan.org. Purchase your copy of We Carry Kevan here >> https://amzn.to/3F2jEW9

Season 4 is here! Oral traditions are an important part of the cultural identity of many Southeast Asian countries, but their ephemeral state leaves them vulnerable for future generations. Malaysian artist-researcher duo Ambi Sun and Sha Roose join us to talk about the oracle deck they are creating “Tales & Oracles of Eleven - Mythology from Southeast Asia”. The oracle deck features 44 legends from 11 Southeast Asian countries including Brunei, Cambodia, Indonesia, Laos, Malaysia, Myanmar, the Philippines, Singapore, Thailand, East Timor (Timor Leste), and Vietnam. By turning the folktales we grew up hearing from our parents, grandparents, and cultural elders, the duo hopes to ensure these tales are not lost or forgotten over time.  Sun tells us about the biases she has faced as an Asian female artist, while Sha talks about her experience living with Spinal Muscular Atrophy. Learn more about the oracle deck ⁠here⁠ ------------------------------------------------------- Stay Connected with Proudly Asian: Website - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://proudly-asian.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Instagram - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://instagram.com/proudly.asian⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Youtube - ⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.youtube.com/@proudlyasianpodcast⁠⁠⁠⁠⁠⁠⁠⁠⁠ Send us a voice message - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://anchor.fm/proudlyasian/message⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Support us - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://ko-fi.com/proudlyasian⁠⁠⁠⁠⁠⁠ Email us - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠proudlyasianpodcast@gmail.com --- Support this podcast: https://podcasters.spotify.com/pod/show/proudlyasian/support

Jordan Schroeter was born with Spinal Muscular Atrophy but that does not define him. He inspires you to overcome any obstacle you may face. linktr.ee/jordanschroeter #Disability #SMA #SpinalMuscularAtrophy #Filmmaker #Comedy #Faith

In this episode, we review the high-yield topic of ⁠Spinal Muscular Atrophy⁠⁠⁠⁠ ⁠⁠⁠⁠from the Knee & Sports section. Follow ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Orthobullets⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ on Social Media: Facebook: www.facebook.com/orthobullets Instagram: www.instagram.com/orthobulletsofficial Twitter: www.twitter.com/orthobullets LinkedIn: www.linkedin.com/company/27125689 YouTube: www.youtube.com/channel/UCMZSlD9OhkFG2t25oM14FvQ --- Send in a voice message: https://podcasters.spotify.com/pod/show/orthobullets/message

It was the fall of 2003 when Southern Illinois University student Sarah Delashmit told her suitemates that she had cancer. All of them were devastated and even shaved their heads in solidarity. The next year, Sarah told her roommate she had gotten into a horrific car accident, was in a wheelchair and would never walk again. By the time Sarah moved out of the dorm, the roommate and she were not on speaking terms, and the roommate saw Sarah in the cafeteria walking just fine.Sarah Delashmit suffered from Factitious Disorder, a rare psychological condition in which a patient intentionally falsifies medical or psychiatric symptoms in order to gain attention. But her lies did not stop with the wheelchair. Over the next decade, Sarah would claim to have Ebola, countless miscarriages, breast cancer, a deadly stalker and another rare disorder called Spinal Muscular Atrophy. She would attend camps for the disabled as a counselor and as a camper and her lies, scams and nefarious fraudulent actions would take her all over the country, on the Dr. Phil show, and, finally, to prison.Show Notes:https://www.iheart.com/podcast/1119-sympathy-pains-95154480/This show is part of the Spreaker Prime Network, if you are interested in advertising on this podcast, contact us at https://www.spreaker.com/show/5659010/advertisement

Our guest this week is Ben Mattlin of Los Angeles, CA a disability advocate, an author, educator and writer. Ben was born in New York City in 1962 with Spinal Muscular Atrophy (SMA), a congenital muscle weakness. He attended the Walden School, Rudolf Steiner High School, and Harvard University, graduating cum laude.Ben and his wife, Mary, have been married for 34 years and are the proud parents of two adult daughters. Ben is a freelance writer and frequent contributor to Financial Advisor magazine. His writings have appeared in the New York Times, LA Times, and The Washington Post, to name a few.He is also the author of: three books Miracle Boy Grows Up (2012), In Sickness & In Health (2018), and Disability Pride: Dispatches From A post-ADA World. (2022) Ben reflects on being mainstreamed educationally, his objections to being labeled and misrepresented by the National MDA as a youth and how he has gone on to live a full and rewarding life as a husband, father and being gainfully employed, despite being confined to a wheelchair. It's a fascinating and uplifting interview, which we'll hear on this week's episode of the Special Fathers Network Dad To Dad Podcast.Show Links -Email – benmattlin@gmail.comLinkedIn – https://www.linkedin.com/in/ben-mattlin-3b8b452/Website - https://www.benmattlin.com/Special Fathers Network - SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 500+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated. There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channe... Please support the SFN. Click here to donate: https://21stcenturydads.org/do...Find out about Horizon Therapeutics – Science and Compassion Working Together To Transform Lives. https://www.horizontherapeutics.com/Special Fathers Network: https://21stcenturydads.org/Discover more about the Dads Honor Ride 2023 - https://21stcenturydads.org/2023-dads-honor-ride/

Episode Notes On episode 331 I sit down with my guest Maylan Chavez as we explore her experiences with Spinal Muscular Atrophy; we talk about advocacy, intimacy, CureSMA, her love of Fall Out Boy & so much more. Enjoy!  Follow Maylan at www.instagram.com/maythesunrise Follow me at www.andrewgurza.com Episode Sponsors Clone-A-Willy or Clone-A-Pussy all your own and get 20% off sitewide by using coupon code DARKPOD at Checkout. www.cloneawillycom.  Get 15% off your next purchase of sex toys, books and DVDs by using Coupon code AFTERDARK at checkout when you shop at trans owned and operated sex shop Come As You Are www.comeasyouare.com  Support another great Disability themed pod! Listen to You First: A Disability Rights Florida Podcast.  GET YOUR TIX TO THE NEW PRODUCTION ALL ABOUT SEX AND DISABILITY, ACCESS ME, IN TORONTO JUNE 16-24, 2023 AT WWW.ACCESSME.SQUARESPACE.COM  Get Your Tickets to See Me Live @ SexTechTo Mixer on June 27th.  More Info at www.sextechto.com  This podcast is powered by Pinecast.

Dr. Wendy Chung's childhood fascination with puzzles and mysteries gives her an edge when it comes to solving the mysteries of genetic diseases. In conversation with Host Catherine Price, Dr. Chung outlines her innovative work with The Human Genome project, her role in identifying the genes that cause spinal muscular atrophy and the collaborative efforts that went into developing life-sustaining treatments. Dr. Chung also discusses the GUARDIAN Program – which uses the newborn heel prick test to screen for a wide variety of genetic diseases, thereby providing equitable access to diagnosis and life-saving care to all infants. The views shared on this podcast solely reflect the expertise and experience of our guests. For more information visit nyp.org/Advances

You know that feeling when you really want to be a dad but you've been in a powered wheelchair since you were two years old and you aren't sure if your balls can produce enough viable sperm that you and your partner can conceive so you do some testing and find out that the doctors aren't certain either which means that you can totally TRY but you're carefully considering all your options because you KNOW you'll be awesome parents despite what all the trolls on the internet want you to believe? ... No? Well then allow influencer, author, and disability advocate Shane Burcaw (Squirmy & Grubs) to enlighten you. This is Part 2 of a 2 part episode.  [Episode photo by Studio Twelve:52][Listen to Part 1 of this episode here]Episode 81 of Modern Dadhood opens with a Marc sharing about the unexpected postponement of his twin boys' 5th birthday party. The guys waste no time diving back into the second half of their interview with Shane Burcaw. Shane candidly shares about his shared desire with his wife Hannah to become parents, and the unique challenges that they may face as a result of his Spinal Muscular Atrophy. Conversation topics include:•  Alternative options to conceiving via IVF•  How to encourage healthy sperm when you are in a wheelchair•  The pros and cons of sharing your private life on YouTube•  Managing trolls and negative/hateful comments•  Exposing our kids to technology•  Would Shane and Hannah's baby be genetically predisposed to his disability?•  And more!The guys close out the episode by sharing a positive AND a negative review of the show in a new installment of Kisses and Disses. Leave a review of Modern Dadhood on Apple Podcasts for a chance to be featured in a future segment!Links:Squirmy and Grubs (website)Squirmy and Grubs (YouTube)Junkyard Mayhem Podcast (Apple)Shane's booksSpinal Muscular AtrophyIn Vitro Fertilization (IVF)Red Vault AudioCaspar BabypantsSpencer AlbeeStuffed Animal

Shane Burcaw wants to be a dad. He and his wife Hannah Aylward make no secret of their desire to become parents as they share some of the most private aspects of their unique interabled life together in weekly videos and podcast episodes on their YouTube channel Squirmy and Grubs. But will their ability to have biological kids be thwarted by Spinal Muscular Atrophy (SMA), the disease that has found Shane in a powered wheelchair since he was two years old? Only testing and time will tell. Shane joins the Modern Dadhood conversation to share candidly about their journey with In Vitro Fertilization (IVF). This is part 1 of a 2 part episode.Episode 80 of Modern Dadhood opens with Adam and Marc quickly recounting their recent experience at Podfest Multimedia Expo in Orlando. They shout out to a handful of new podcaster friends and gleefully giggle as they recount their antics. Then shit gets real when they introduce Shane Burcaw into the Modern Dadhood conversation. Shane is a 30 year old author, influencer, podcaster, and founder of a nonprofit called Laughing At My Nightmare, a name which brilliantly sums up Shane's amazing sense of humor and attitude toward his lifelong disability, Spinal Muscular Atrophy (SMA). Shane shares candidly about his disability, his attitude toward his disability, and why he and his wife Hannah (who is not disabled) dedicate their time to advocating for those with physical disabilities, proudly representing the interabled couple population, and living an adventurous and unique life. They've documented the beginning stages of their In Vitro Fertilization (IVF) journey on their channel and their podcast Junkyard Mayhem, and Shane openly discusses it with us. Topics include:•  What is Spinal Muscular Atrophy (SMA)?•  The advancements in treatment•  Young Shane's vision for his future•  Shane's shift in his feelings of self-worth•  Challenges of conceiving when you are dependent on a wheelchair•  Shane and Hannah's options for trying to conceive•  The "testing" process and results•  The odds of having multiples through IVF•  And more!This is part 1 of a 2 part episode.Before closing out the episode, Adam shares a quick and ridic installment of Did I Just Say That Out Loud? Links:Squirmy and Grubs (website)Squirmy and Grubs (YouTube)Junkyard Mayhem Podcast (Apple)Shane's booksSpinal Muscular AtrophyIn Vitro Fertilization (IVF)Podfest Multimedia ExpoCycle Chats PodcastMagical Mindset Moments PodcastKeeping Up With The Chaos PodcastRich Does a ThingRed Vault AudioCaspar BabypantsSpencer AlbeeStuffed Animal