Shows
Great Company with Jamie LaingJESY NELSON - PART 2: Why I Walked Away From Little MixThis is part 2 of my conversation with the incredible Jesy Nelson. Growing up in Romford, Jesy always dreamed of being on stage. But years of bullying slowly knocked her confidence until she stopped believing in herself, right up until The X Factor. Auditioning for The X Factor changed Jesy’s life. Her dreams came true overnight but fame wasn’t what she thought it would be. In part 2 of our conversation, Jesy opens up about what fame was really like and the relentless trolling that followed her. She shares the real re...
2026-02-0643 min
Great Company with Jamie LaingJESY NELSON - PART 1: Becoming a Mum & The Fight No Baby Should FaceJesy Nelson rose to global fame with Little Mix, experiencing the highest highs and lowest lows in the public eye. But nothing could have prepared her for motherhood.Jesy’s world changed when her twin daughters, Ocean Jade and Story Monroe, were diagnosed with Spinal Muscular Atrophy Type 1, a rare and severe condition. Like many of us, my heart broke when I watched her video sharing the news.For the first time on a podcast, Jesy opens up about her pregnancy, the endless hospital visits, the constant fear and the moment everything changed....
2026-02-0446 min
Living With SMAEP 44: Resonate 2004 - Adventure Without LimitsResonate 2004: Adventure Without Limits – A Look Back at 2024 Join us as we rewind to one of the most inspiring moments of Resonate 2024 – Adventure Without Limits at Calvert Trust Exmoor. In this special reflection, we sit down with brothers Sam and Alex Bolton, who took part in a weekend full of excitement, courage, and firsts. With heartfelt input from their PA, Natalie, we hear what it meant for their family to be part of an inclusive adventure experience where barriers were broken, and limits redefined. From climbing walls to zip wires, canoeing to abseiling, the Boltons share how the weekend open...
2025-04-2837 minLiving With SMAEP:43 - Motherhood, My Way: Parenting with SMAMotherhood & Living with SMA: Everything You Need to Know Description: Becoming a parent is a life-changing journey, and when you’re living with a long-term condition like Spinal Muscular Atrophy (SMA), it comes with its own unique set of challenges and joys. In this video, we dive into Motherhood—the experience of parenting while managing a disability. Join us as we discuss: ✅ Preparing for parenthood with a long-term condition ✅ Adaptive parenting techniques & equipment ✅ Navigating healthcare & support systems ✅ Overcoming challenges & embracing the joys of parenting Whether you have SMA, another dis...
2025-04-0731 min
Living With SMAEp 40: Celebrating PrideJoin host Steven on this special Pride episode of *Pride and Possibility*, where we celebrate the vibrant intersection of the LGBTQIA+ community and disability pride. Steven is joined by three incredible guests: Shelby, Emily, and Jordanne, who each bring unique perspectives and experiences as individuals living with disabilities and proudly identifying as part of the LGBTQIA+ community.In this heartfelt and empowering episode, Shelby, Emily, and Jordanne share their personal journeys, discussing the challenges and triumphs they have faced in navigating their identities. They delve into the importance of representation, the power of community, and the ways...
2024-07-0239 minLiving With SMAEp 38: #KnowNoBounds making the outdoors more accessibleGet ready to witness an incredible feat of determination and resilience in our latest podcast episode, where two powered wheelchair users, Maxwell and Joshua, talk about an awe-inspiring journey to race up Snowdon and raise £100k for a worthy cause. 🏔️💪In this exhilarating episode, we'll delve into the inspiring story behind their ambitious mission, aptly named #KnowNoBounds. Join us as we follow Maxwell and Joshua's incredible journey, from the initial spark of inspiration to the rigorous preparation and training required for such a monumental challenge.Through their unwavering spirit and determination, Maxwell and Joshua defy expectations and demonstra...
2024-03-2834 minLiving With SMAEp 36: Resonate 2023 LookbackStep into the great outdoors with us in this special episode of our podcast, "Resonate." Join Molly, Ben, Ellie, Sophie, and Alicia as they share their incredible experiences from a weekend event designed to resonate with adults living with SMA (Spinal Muscular Atrophy).In this conversation, our guests take you on a journey through the beautiful landscapes, shared adventures, and profound connections they discovered at this fully accessible outdoor event. But it's not just about the event itself; our guests also delve into why they can't contain their excitement for the next one. From forging l...
2024-01-2929 minLiving With SMAEp: 35 Festivities & Highlights of 2023Welcome to a festive and reflective episode of our podcast, where Ross and Luis take you on a delightful journey through the holiday season and the highlights of 2023. As the year comes to a close, join us in celebrating the joy of Christmas while unravelling Luis's potential undercover Grinch tendencies.In this special episode, we'll rewind the tape and revisit the incredible year we've had on the podcast. From thought-provoking conversations to inspiring guest interviews, 2023 has been a year of growth, learning, and memorable moments. We'll share some of our favourite episodes, insights gained, and the impact we've...
2023-12-2647 minLiving With SMAEp34: Positive Mindset & Career AspirationsWelcome to an inspiring episode of our podcast, where we delve into the remarkable journey of Sam and Alex, two extraordinary individuals living with SMA (Spinal Muscular Atrophy). In this heartwarming conversation, we explore "A Positive Mindset and Career Aspirations" and how their experiences have shaped them into the determined, optimistic, and vibrant individuals they are today. Despite the challenges they've faced, Sam and Alex radiate positivity and embody the best versions of themselves. Their resilience and zest for life testify to the indomitable human spirit. In a world where many 18-year-olds may take their positivity for g...
2023-11-2845 minLiving With SMAEp 33: SMA & AdvocacyWelcome to a deeply moving and enlightening episode of our podcast, where we shine a spotlight on "The Importance of Spinal Muscular Atrophy Advocacy" and the transformative power of social media in advocacy efforts. In this remarkable conversation, we are joined by four extraordinary individuals - Portia, Eden, Hamany, and Maxwell - who are helping to drive change in the world of Spinal Muscular Atrophy (SMA) advocacy.Our guests share their heartfelt stories and reveal why they are so passionately dedicated to this vital advocacy cause. Through their voices, we explore the profound impact SMA has on the...
2023-10-3149 min
Devoid of Space[S02E01] The Revelation of Haven StationContent Warnings: Toxic relationship, manipulation, violence, loud sudden noises, freezing to death, murder, grief/loss, hallucination, ghosts, description of corpse
**
After Felix returns back to Earth, they are still haunted by memories and potentially the ghost of Lucian. Despite the help and presence of their therapist and Julian, Lucian’s younger brother, Felix can’t stop thinking of what happened. When the station is staged to be destroyed, Felix decides to go back one last time.
**
The Cast
Felix Smauk: Kale Brown
Lucian Valentine: Vic Collins
Ghost 1: Lafayette Uttarapong
Ghost 2: Wyatt West
Ghost 3: Jess...
2023-10-3142 minLiving With SMAEp 32 Keep your goals away from the trollsWelcome to a thought-provoking and eye-opening episode of our podcast, where we delve into the world of online trolling and how it can impact individuals striving to achieve their goals. In this episode, we have the privilege of speaking with the resilient and inspiring Alex Dacy, who shares her incredible journey of handling ruthless online trolling while pursuing her dreams.Online trolling has become an unfortunate reality in today's digital age, where anonymity often fuels cruelty. Join us as we uncover the harsh realities of cyberbullying and the toll it can take on one's mental health and...
2023-08-3139 minLiving With SMAEp 30: living with a long term condition and Mental health Part 2Welcome back to the highly anticipated second part of our podcast episode on the profound connection between mental health and living with a long-term condition. Building upon the captivating story we shared in Part 1, this episode delves deeper into the transformative power of finding support and the results that can come from it.In this continuation, we explore the pivotal role of support for people living with a long-term condition. We shine a light on the paths they can take to find the support the needed and the incredible outcomes that unfolded as a result.Join us...
2023-07-2046 minLiving With SMAEp 29: Mental Health and living with a long term conditionWelcome to a truly inspiring and heartfelt episode of our podcast, where we embark on a deeply personal journey exploring the powerful connection between mental health and living with a long-term condition. In this first part, we delve into the extraordinary story of how an individual with Spinal Muscular Atrophy found solace and support through an unexpected bond with a Mental Health Professional during their time in university.Join us as we unravel this remarkable tale of resilience, compassion, and mutual growth. We'll hear first hand accounts from Becca and Ellie, sharing their lived experiences of navigating...
2023-06-1945 min
Living With SMATransitioning into School Part 1 (Nursery to Primary)Welcome to our next episode, where we explore the exciting and sometimes challenging journey of transitioning into school, from nursery to primary.In this episode, we'll be diving deep into the many aspects of this significant milestone in a child's life with SMA. We'll hear from Portia Thorman and Charlotte Lavelle, as we explore the social, emotional, and academic dimensions of transitioning to primary school.We'll discuss the practical considerations of preparing for school, from selecting the right school to managing the logistics. We'll also explore the emotional challenges that children and parents may face...
2023-04-0243 min
Living With SMACare One Year On (PAs Are Not Just for Care Part 2)Welcome to the latest episode of our podcast, where we take an unflinching look at the state of care in the UK today.As one of the wealthiest countries in the world, the UK has a moral obligation to provide high-quality care for all its citizens, particularly those who are vulnerable or in need. But as we'll discover in this episode, the reality is far from ideal.We'll be delving deep into the complex web of challenges facing the care system, from chronic underfunding to understaffing and inadequate training. We'll hear from Ross Lannon, Luis...
2023-02-2344 min
Living With SMA25: Unleashing The Potential of SportWelcome to a brand new episode of our podcast, where we explore the incredible power of sport to transform lives and unleash human potential!In this episode, we'll be diving deep into the many ways in which sport can inspire, challenge, and elevate us to new heights. From the thrill of competition to the camaraderie of team spirit, sport has the unique ability to bring out the best in us, both as individuals and as a community.We'll be hearing from Cath McNicol and Jack Humphries. They'll be sharing their personal stories and insights, and...
2023-02-2350 min
Devoid of SpaceA Good Morning and a Great AfternoonIt had been a good morning for Maria Harris.
It was not going to be a good afternoon.
She had forgotten what day it was.
**
As a Partnership Compatibility Consultant for the Central Authority of Independent Investigations, Maria is responsible for matching new, bereaved, or abandoned investigators with new partners.
Nothing brings her greater joy than seeing someone leave her office with not just a partner, but a partner they can rely on it.
Unfortunately, Lucian Valentine has no interest in relying on anyone but himself.
This Valentine's Day...
2023-02-1428 min
Living With SMA24: How to surprise your family at ChristmasWelcome to the Living With SMA Podcast (Also available on ▶ | YOUTUBE)SMA UK host Ross Lannon chats to guests Luis Canto E Castro and Cath McNicol about festivities and how we can surprise our loved ones with gifts this Christmas when you have a disability.*THIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA*This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️You can contact SMA UK on the following social media platforms ⬇️⬇️▶ | INSTAGRAM: https...
2022-12-2137 min
Living With SMAEp23: Social MediaWelcome to the Living With SMA Podcast (Also available on ▶ | YOUTUBE)SMA UK host Ross Lannon chats to guests Sandie Roberts and Maxwell Mcknight about social media. Exploring the pros and cons and looking at how it can offer a great job opportunity for people and even lead to a career!*THIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA*This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️You can contact SMA UK on the following social media platfor...
2022-11-3051 min
Living With SMA22 - The Right MindsetWelcome to the Living With SMA Podcast (Also available on ▶ | YOUTUBE) *TRIGGER WARNING*The conversations that take place today are of a sensitive nature regarding mental health, disability and mindset. THIS PODCAST IS NOT JUST FOR PEOPLE WITH SMAThis content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️SMA UK host Ross Lannon chats to guests Anna Litvinova and Luis Canto E Castro about 'The Right Mindset'.Each of our guests today shares t...
2022-11-1152 min
Living With SMA21 - Part 2: Higher Education, University & the transition Into employmentWelcome to the Living With SMA Podcast.In PART 2️⃣ of Episode 21 of the #LivingWithSMA Podcast we'll be looking at the pros and cons of university. We'll also be talking about work experience and sharing advice for those who decide not to go to university. #LivingWithSMA #SMAUK #SMA #SpinalMuscularAtrophyWatch this episode on our YouTube channel here.Each of our guests today shares their own personal views and individual stories.You can contact SMA UK on the following social media platforms ⬇️⬇️twitter.com/SMA_UK_...
2022-10-0722 min
Living With SMA21 - Part 1: Higher Education, University & the transition into employmentWelcome to the Living With SMA Podcast.In PART 1️⃣ of Episode 21 of the #LivingWithSMA Podcast, SMA UK Host Ross Lannon talks to Mia Myers and Steven Jones about the university experience. They also look at whether having a disability makes you look at things differently when exploring higher education and they talk about accessibility and fighting for justice.Watch this episode on our YouTube channel here.Ross, Mia and Steven all come from different angles. Mia is currently at University, Steven has graduated from University and in employment and Ross did not g...
2022-10-0626 min
Living With SMA20 - Part 3: Disability & EducationWelcome to the Living With SMA Podcast.In PART 3 of Episode 20 of the #LivingWithSMA Podcast, SMA UK Host Ross Lannon chats to 17 year old twins Sam and Alex about the barriers they faced during their secondary school experience. We also talk about whether school days really are the best days of our lives and the assumption that people with physical disabilities also have learning difficulties. #LivingWithSMA #SMAUK #SMA #SpinalMuscularAtrophyWatch this episode on our YouTube channel here.Each of our guests today shares their own personal views and individual st...
2022-09-2318 min
Living With SMA20 - Part 2: Disability & EducationWelcome to the Living With SMA Podcast.In PART 2 of Episode 20 of the #LivingWithSMA Podcast, SMA UK Host Ross Lannon chats to 17 year old twins Sam and Alex about the barriers they faced during their secondary school experience. We also talk about whether school days really are the best days of our lives and the assumption that people with physical disabilities also have learning difficulties. #LivingWithSMA #SMAUK #SMA #SpinalMuscularAtrophyWatch this episode on our YouTube channel here.Each of our guests today shares their own personal views and individual st...
2022-09-2210 minLiving With SMA20 - Part 1: Disability & EducationWelcome to the Living With SMA Podcast.In PART 1 of Episode 20 of the #LivingWithSMA Podcast, SMA UK Host Ross Lannon chats to 17 year old twins Sam and Alex about having a disability and being in the education system. We discuss how difficult it was for Sam and Alex to find an accessible school close to home and we also talk about social media and how it has developed over time. #LivingWithSMA #SMAUK #SMA #SpinalMuscularAtrophy Watch this episode on our YouTube channel here.Each of our guests today shares their own...
2022-09-2115 min
Living With SMA19 - Part 4: SMA Life Through The AgesWelcome to the Living With SMA Podcast.PART 4 provides a fitting finale to a Episode 19 of the #LivingWithSMA Podcast. SMA UK Host Luis Canto E Castro chats to 11 year old Sonny and his mum Grace about what life is like with SMA. As August is SMA Awareness Month, we are shinning the spotlight on Spinal Muscular Atrophy by inviting 4 different guests from across the SMA Community to share their own lived experience. Watch this episode on our YouTube channel here.#LivingWithSMA #SMALifeThroughTheAges #SMAUK #SMA #SpinalMuscularAtrophy Each of our gu...
2022-08-2615 min
Living With SMA19 - Part 3: SMA Life Through The AgesWelcome to the Living With SMA Podcast.In PART 3 of Episode 19 of the #LivingWithSMA Podcast, SMA UK Host Luis Canto E Castro chats to 18 year old Maxwell Mcknight about what life is like with SMA. As August is SMA Awareness Month, we are shinning the spotlight on Spinal Muscular Atrophy by inviting 4 different guests from across the SMA Community to share their own lived experience. Watch this episode on our YouTube channel here.#LivingWithSMA #SMALifeThroughTheAges #SMAUK #SMA #SpinalMuscularAtrophy Each of our guests today shares their own personal view...
2022-08-2511 min
Living With SMA19 - Part 2: SMA Life Through The AgesWelcome to the Living With SMA Podcast.In PART 2 of Episode 19 of the #LivingWithSMA Podcast, SMA UK Host Luis Canto E Castro chats to 56 year old Joan Turner about what life is like with SMA. As August is SMA Awareness Month, we are shinning the spotlight on Spinal Muscular Atrophy by inviting 4 different guests from across the SMA Community to share their own lived experience. Watch this episode on our YouTube channel here.#LivingWithSMA #SMALifeThroughTheAges #SMAUK #SMA #SpinalMuscularAtrophy Each of our guests today shares their own...
2022-08-2418 min
Living With SMA19 - Part 1: SMA Life Through The AgesWelcome to the Living With SMA Podcast.In PART 1 of Episode 19 of the #LivingWithSMA Podcast, SMA UK Host Luis Canto E Castro chats to 23 year old Becca Torricelli about what life is like with SMA. As August is SMA Awareness Month, we are shinning the spotlight on Spinal Muscular Atrophy by inviting 4 different guests from across the SMA Community to share their own lived experience in this episode. Watch this episode on our YouTube channel here.#LivingWithSMA #SMALifeThroughTheAges #SMAUK #SMA #SpinalMuscularAtrophy Each of our guests toda...
2022-08-2315 minLiving With SMA18 - Part 3: You've Got a Friend in MeWelcome to the Living With SMA Podcast. In our final part of episode 18, Ross Lannon, Luis Canto E Castro, Connor Thompson and Lauren Townsend talk about:The rewards and benefits of being a PAThe media representation of PA’s and Care in General‘The Fundamentals of Caring’ film starring Paul Rudd, Craig Roberts and Selena Gomez What would you say to someone potentially thinking about becoming a carer?Watch this episode on our YouTube channel here.Each of our guests today shares their own personal views and individual stories.
2022-07-2209 minLiving With SMA18 - Part 2: You've Got a Friend in MeWelcome to the Living With SMA Podcast. Today in part 2 of this episode, Ross Lannon, Luis Canto E Castro, Connor Thompson and Lauren Townsend talk about setting boundaries with your PA, the relationship process, the skills needed to become a PA and the importance of empathy and compassion. Watch this episode on our YouTube channel here.Each of our guests today shares their own personal views and individual stories.You can contact SMA UK on the following social media platforms ⬇️⬇️twitter.com/SMA_UK_
2022-07-2116 minLiving With SMA18 - Part 1: You've Got a Friend in MeWelcome to the Living With SMA Podcast. In this latest 3 part episode, Ross Lannon, Luis Canto E Castro, Connor Thompson and Lauren Townsend have a very intimate conversation, talking about the positive side of care and the benefits that both the carer and the disabled individual can get from this relationship. Watch this episode on our YouTube channel here.Each of our guests today shares their own personal views and individual stories.You can contact SMA UK on the following social media platforms ⬇️⬇️twitter.com/SMA_U...
2022-07-2018 minLiving With SMA17-Part 3: About ToiletsWelcome to the Living With SMA Podcast. In the final part of this 'About Toilets' episode, Luis Canto E Castro, Ross Hovey and Jasmine West discuss shared space bathrooms, queue jumping and ignorance and feeling like a burden.Watch this episode on our YouTube channel here.Each of our guests today shares their own personal views and individual stories on accessible toilets.You can contact SMA UK on the following social media platforms ⬇️⬇️Twitter: twitter.com/SMA_UK_Facebook: facebook.com/SpinalMuscularAtrophyUK/ Instagram: instagram.com/sma_u...
2022-06-1819 minLiving With SMA17-Part 2: About ToiletsWelcome to the Living With SMA Podcast. In part 2 of this 3 part episode 'About Toilets' episode, Luis Canto E Castro, Ross Hovey and Jasmine West discuss gender neutral bathrooms, policy standards and lack of awareness.Watch this episode on our YouTube channel here.Each of our guests today shares their own personal views and individual stories on accessible toilets.You can contact SMA UK on the following social media platforms ⬇️⬇️Twitter: twitter.com/SMA_UK_Facebook: facebook.com/SpinalMuscularAtrophyUK/ Instagram: instagram.com/sma_ukIf you d...
2022-06-1715 minLiving With SMA17-Part 1: About ToiletsWelcome to the Living With SMA Podcast. This is not just a standard episode on toilets. In this latest 3 part episode, Luis Canto E Castro, Ross Hovey and Jasmine West discuss and share their own personal views and individual stories on using accessible toilets in the UK. Watch this episode on our YouTube channel here.Luis, Jasmine and Ross are talking about the challenges they face on a regular basis and share some ideas on what they think toilets should look like in the future and where they believe peo...
2022-06-1617 min
Breathing Space: A Sci-Fi Western Audio AnthologyThe Station at the End of the Universe
Content warnings: this episode contains reference to near death experience, implied bombing attempt, unnerving and terrifying experiences, implied unreality
**
"Have you ever heard of the Station at the End of the Universe? It is told on planets, ships and space stations alike, one that is told late at night... Some say it’s a bright place... Others say it’s derelict and in ruins... Its appearance changes depending on who you ask about it. But you'll always find someone who has seen it.
As five friends depart Venus after reuniting, they take...
2022-06-0335 min
Devoid of SpaceThe Mystery of Haven StationContent Warnings: Death, being hunted/chased by an unseen force, verbal insults and threats, betrayal, gaslighting
**
Two detectives who are well-known for solving tough cases are called to investigate Haven Station, one of the first stations to be built and lived in by humans on Mars, but was destroyed by a storm. All those who go there now mysteriously disappear. Can the pair solve the mystery of why people are going missing or will they become the next victims?
**
The Cast
Lucian Valentine- Vic Collins
Felix Smauk- Kale Brown
Ghost- Lafayette Uttarapong
...
2022-05-2651 minLiving With SMA16: PAs Aren't Just For Care!Welcome to the Living With SMA Podcast. In this latest episode, Michaela Hollywood, Luis Canto E Castro and Katy Etherington talk openly about Personal Assistants and share their own personal views and individual stories. Watch this episode on our YouTube channel here. -- SOME BACKGROUND -- There is a huge shortage of PAs in the UK at the moment, and this is impacting on thousands of people across the disabled community. To promote a broader view of what it's like to be a PA, and to share the b...
2022-03-181h 07Living With SMA15: Health ScreeningWelcome to the Living With SMA Podcast. Today SMA UK Host Kerry Thompson talks to Sue Tucker and Clare Gray about Health Screening with a focus on mammograms and cervical screening.If you prefer to watch this episode, please visit our YouTube channel here.Kerry is 42 years of age. At 24 she was diagnosed with a rare form of Muscular Dystrophy called FHL1 Gene mutation. Kerry writes the blog 'My Life Kerry's Way' (kerry-thompson.com), she is a campaigner for Disability Rights, most notably for her work campaigning for Changing Places Toilets and...
2022-03-0434 minLiving With SMA14: SMA Type 3Welcome to the Living With SMA Podcast. Today SMA UK Host Steve Jones talks to Eden Kent and Josh Wintersgill about SMA Type 3.If you prefer to watch this episode, please visit our YouTube channel here.Steve is 28 years of age, lives in London and currently works for the UK Government in the Civil Service, where he has worked in a number of different roles from EU Exit to Code Response and is now involved in the HMRC. Steve also has SMA Type 3. Eden Kent is 21 years of age and...
2022-02-1158 minLiving With SMA13: Employment & BloggingWelcome to the Living With SMA Podcast. Today SMA UK Host Ross Lannon talks to Kerry Thompson about blogging and career opportunities. Each of our guests today shares their own personal views and individual stories.Ross is 28 years of age, lives in Cornwall and has SMA Type 2. He is a lifestyle and disability blogger (alifeonwheels.co.uk) studying journalism and is also Co-presenter at CHAOS Radio.Kerry is 42 years of age. At 24 she was diagnosed with a rare form of Muscular Dystrophy called FHL1 Gene mutation. Kerry writes the blog 'My Life Kerry's Way' (kerry-thompson.com), s...
2021-11-1853 minLiving With SMA12: PeriodsSMA UK Host Mia Myers talks to Jordanne and Beth about periods and how to manage them.The topic of periods is something pretty taboo in society and not really spoken about enough. So hopefully this conversation today will be a small part of widening discussion of this topic.We need to make sure that we talk about it! If you prefer to watch this episode, please visit our YouTube channel here.If you do have any questions for Mia, Jordanne, Beth and the team at SMA U...
2021-10-2949 minLiving With SMA11: Hitting Our FortiesIn a conversation about their lives, Toby (SMA UK Trustee) and Andi (Treat SMA) talk about getting kicked out of university, mental health, treatment, work, healthcare, support and more…. If you prefer to watch this episode, please visit our YouTube channel here.If you do have any questions for Toby, Andi and the team at SMA UK please email us at connections@smauk.org.ukTwitter: https://twitter.com/SMA_UK_Facebook: https://www.facebook.com/SpinalMuscularAtrophyUKInstagram: https://www.instagram.com/sma_uk
2021-10-0842 minLiving With SMA10: Family journeys from diagnosis to schoolWelcome to the Living With SMA Podcast. Today SMA UK Host Martyn Sibley talks to Portia Thorman and Mark & Panna Wilson about their family journeys from diagnosis to school and Nusinersen treatment. Each of our guests today shares their own personal views and individual stories.Portia reflects on her family’s SMA journey with Ezra who is now aged 4.5 years and has SMA Type 1.Mark and Panna reflect on their family’s SMA journey with Adi who is now aged 5.5 years and has SMA Type 2 .If you prefer to watch this episode, pl...
2021-09-2454 minLiving With SMA9: Fashion, Make-up and ConfidenceWelcome to the Living With SMA Podcast. Today SMA UK Host Mia Myers talks to Ellie Darby-Prangnell and Sophie Bradbury-Cox about Fashion, Make-up and Confidence.Mia will be leading a number of episodes talking to people from the SMA community, focusing on specific issues that women and non-binary people may disproportionately face. Each of our guests today shares their own personal views and individual stories.If you prefer to watch this episode, please visit our YouTube channel here.If you do have any questions for Mia, Ellie, Sophie and the...
2021-08-2042 minLiving With SMA8: Siblings - Part 2: Chris & AlexChris talks to his brother Alex, asking him what it's like having a brother with SMA. They both share a passion for sport and are massive fans of Northampton Saints. Chris has also coached his brother Alex, helping him to sporting glory by winning the National Championships in flag football and being named final MPV in 2017.If you prefer to watch this episode, please visit our YouTube channel here.If you do have any questions for Chris, Alex or the team at SMA UK please email us at connections...
2021-07-2827 minLiving With SMA7: Treatment Part 1: RisdiplamSMA UK Host Martyn Sibley talks to Emma Vogelmann, Ross Hovey and Olivia Webster about their experience with Risdiplam. Each of our guests today shares their own personal views and individual stories.If you prefer to watch this episode, please visit our YouTube channel here.If you do have any questions for Emma, Ross, Olivia and the team at SMA UK please email us at connections@smauk.org.ukTwitter: https://twitter.com/SMA_UK_Facebook: https://www.facebook.com/SpinalMuscularAtrophyUKInstagram: https://www.instagram.com/sma_uk
2021-07-141h 13Living With SMA6: Siblings - Part 1: Jordanne & ShannonSMA UK Host Jordanne talks to her sibling Shannon about their relationship growing up and what things are like now.If you prefer to watch this episode, please visit our YouTube channel here.If you do have any questions for the team at SMA UK please email us at connections@smauk.org.uk
2021-07-0722 minLiving With SMA5: Parents Perspective of Diagnosis 25 years agoSMA UK Host Suzanne talks to her mum Margaret where we hear about her experience as a parent and the SMA diagnosis experience 25 years ago.If you prefer to watch this episode, please visit our YouTube channel here. If you do have any questions for the team at SMA UK please email us at connections@smauk.org.uk
2021-06-2342 minLiving With SMA4: Adult Onset SMASMA UK Host Martyn Sibley talks to Peter Hartley, who shares his personal journey to a diagnosis of SMA Type 4 in adulthood. Talking about how this ‘Adult Onset’ form of the condition has changed his life, Peter describes some of the challenges he’s faced and overcome and how he’s adapted to living with SMA. You can find additional information on Adult SMA through the Spinal Muscular Atrophy UK website links below:LOOKING AFTER YOURSELF IF YOU'RE AN ADULT WHO HAS HAD A RECENT DIAGNOSIS OF SMA:https://smauk.org.uk/r...
2021-05-2033 minLiving With SMA3: My Experience of RentingFollowing on from Episode 2 on Home Adaptations, SMA UK Host Josh Wintersgill talks with Julian Fiorentini about the challenges he faced around finding and renting accommodation in the UK. Josh shares his journey moving away from home at 18 years of age to finding accommodation and living independently.If you do have any questions for Josh, Julian and the rest of the team at SMA UK please email us at connections@smauk.org.uk
2021-04-2928 minLiving With SMA2: My Experience of Home AdaptationsSMA UK Host Josh Wintersgill talks to Julian Fiorentini, who shares his personal journey from school days, through living in a care home to his experience of making adaptations to his home, as an adult. Not everyone will need or use the same adaptations in their home, but we hope this conversation gives you a greater understanding of Julian’s own experience and views. If you do have any questions for the team at SMA UK please email us at connections@smauk.org.uk or if you would like more info please browse through out website here: http...
2021-04-0748 min