Podcasts about Spinal muscular atrophy

We Can't To We Can founder and President Trinity Jagdeo, discusses the non-profit organization for families with disabilities that she founded at the age of 18. Trinity spoke of her friend, Alexus and how her battle with Spinal Muscular Atrophy, also known as SMA, revealed to her the lack of opportunities and role models her friend had. She began with a series of ‘superhero’ books based on kids with disabilities and developed it into a foundation that today promotes representation and inclusion through her books, presents local events and offers financial support to families. She talked about their signature programs, a swap service where families can exchange outgrown medical equipment and their bi-annual fundraiser, Including You! Runway at Pfleeger Hall at Rowan University. This year falling on July 26, the 35th anniversary of the Americans With Disabilities Act, the event features stunning runway performances with both able and disabled models wearing national brands and adaptive clothing, a live DJ, a red-carpet experience, special guest appearances, exciting prizes, and the official launch of their groundbreaking superhero book series spotlighting real kids with disabilities. Learn more at WeCant2WeCan.org. Runway tickets can be found here.

What happens when the care you need to survive just isn't available? Across the U.S., millions of disabled people are facing a growing caregiver shortage—a crisis that makes independent living harder, sometimes impossible. For those with complex physical disabilities like Spinal Muscular Atrophy, the stakes couldn't be higher. Kevin Schaefer This week on Pushing Limits, we talk with Kevin Schaefer—a disability advocate, writer, and podcast host living with SMA. Kevin is the voice behind the podcast, SMA News Today, and Embracing My Inner Alien, a column where he shares deeply personal, often humorous stories about navigating life in a body that relies on others for daily care. Tune in as we unpack what it means to depend on a support system that's under threat of losing government funding, the difference in accessibility across the country, and why creating community matters more than ever. This program is hosted and produced by Dominick Trevethan. The post SMA: Weak Muscles—Stronger Voices – Pushing Limits – June 27, 2025 appeared first on KPFA.

Dr. Al Freedman knows firsthand what it's like to be a parent in the rare disease world—his son Jack lived with Spinal Muscular Atrophy for 26 years. In this conversation, he joins Heather to talk about the deep grief and isolation that comes with rare parenting, and what it means to lose a child to a disease no one else seems to understand. As both a psychologist and a rare disease dad, Dr. Freedman brings a unique perspective—sharing how his personal experience shaped the work he does to support other families navigating similar journeys. This episode is a testament to the love, resilience, and heartbreak of rare parenting—and the community that can be built around it. Connect with Dr. Al: https://www.rarecounseling.com Find Heather and Jake's Help from Heaven: ❤️ APOY Instagram: https://www.instagram.com/aplaceofyespodcast/ ❤️ Heather's Instagram: https://www.instagram.com/heathersstraughter/ ❤️ Jake's Help from Heaven: http://jakeshelpfromheaven.org/ ❤️ Jake's Help from Heaven IG: https://www.instagram.com/jakeshelp/ ❤️ Facebook: https://www.facebook.com/jakeshelpfromheaven ❤️ Our YouTube Channel: https://www.youtube.com/@APlaceofYesPodcast Learn more about your ad choices. Visit megaphone.fm/adchoices

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

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

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!

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.

The big medical lie – the medical system follows the Hippocratic Oath – DO NO HARM. We've been programmed to believe the system cares about the individual. The Hippocratic Oath has been shredded by the shroud of secrecy, pay-for-play, and immunity from liability. We are doing our best to lift the veil and provide the public with informed consent as to what's truly happening. Grace's death has lit a fire that has turned into a duty; Robert's hospital rescue has added gas to the fire. Fact… hospitals have been tied to the government for their profitability for years – don't follow protocols, don't get paid. The hospitals have been technically incentivized for terrible health care for decades because they have to follow Medicare guidelines which are controlled by big pharma. Hospitals have practical immunity from liability because State laws provide little incentive for attorneys to litigate medical malpractice cases. Medical “malpractice” was the third leading cause of death in the U.S., even before COVID! Secrecy has been provided by programming the medical personnel to bow to protocols and society to bow to the medical personnel, falsely creating an underlying trust in a medical system that has become an arm of the government decades ago, under the radar screen. With COVID, the hospitals received bonuses for following NIH guidelines, including the use of Remdesivir and ventilators. Furthermore, they received direct immunity from liability under the PREP Act, which is still in place today because of the Public Health Emergency extension on October 13, 2022. Robert was told by his doctor, “You have COVID, but we have an antiviral that will have you better in three days; most of my patients turn around in two days.” What was the antiviral? Remdesivir. Remdesivir has a kill rate of 75% with three doses or more. Robert had been given his third dose (technically his sixth dosage, because the doctor doubled the dosage he should have received for his 40 pound body weight). Robert has Spinal Muscular Atrophy, so was the perfect disabled candidate for the death squad. God helped us physically remove Robert from the hospital on November 5, 2022, and he is alive. Grace did not die in vain!  According to research by the TN Liberty Network (1), the hospital that murdered Grace received over $20,000 related to the causes of death listed on Grace's death certificate. Secrecy was ratcheted up by direct propaganda spreading a false narrative and not allowing family members in hospital rooms because of ‘COVID policy.' COVID death reimbursements ($9,000) given to families adds to the drama, making it appear that the murderer is your friend. We didn't take their dirty money. Today, many are cutting staff and departments because the COVID money is drying up and people are afraid to go to hospitals (2). This is the perfect setup for ushering in euthanasia incentives, furthering the pay for play rationing of “health” care. The desensitizing of euthanasia (3)(4) is already happening – look at Canada's MAID (Medical Assistance In Dying) program. In the U.K., British Nursing Alliance's Kate Shemirani has pioneered research showing 2000 people must be euthanized every day for the U.K. hospitals to break even! (5) She has even connected the dots relative to stock price increases for companies who supply end-of-life medications! “A Good Death” is the U.K. standard of care (6). What about the U.S.? Implementation of Health Care Cost Reduction Measures For more, see HERE. Support the show

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