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Showing episodes and shows of
Spinal Muscular Atrophy UK (SMAUK)
Shows
Living With SMA
EP 44: Resonate 2004 - Adventure Without Limits
Resonate 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...
2025-04-28
37 min
Living With SMA
EP:43 - Motherhood, My Way: Parenting with SMA
Motherhood & 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...
2025-04-07
31 min
Living With SMA
Ep 40: Celebrating Pride
Join 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...
2024-07-02
39 min
Living With SMA
Ep 38: #KnowNoBounds making the outdoors more accessible
Get 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...
2024-03-28
34 min
Living With SMA
Ep 36: Resonate 2023 Lookback
Step 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...
2024-01-29
29 min
Living With SMA
Ep: 35 Festivities & Highlights of 2023
Welcome 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...
2023-12-26
47 min
Living With SMA
Ep34: Positive Mindset & Career Aspirations
Welcome 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...
2023-11-28
45 min
Living With SMA
Ep 33: SMA & Advocacy
Welcome 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...
2023-10-31
49 min
Devoid of Space
[S02E01] The Revelation of Haven Station
Content 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...
2023-10-31
42 min
Living With SMA
Ep 32 Keep your goals away from the trolls
Welcome 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...
2023-08-31
39 min
Living With SMA
Ep 30: living with a long term condition and Mental health Part 2
Welcome 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...
2023-07-20
46 min
Living With SMA
Ep 29: Mental Health and living with a long term condition
Welcome 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...
2023-06-19
45 min
Living With SMA
Transitioning 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...
2023-04-02
43 min
Living With SMA
Care 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...
2023-02-23
44 min
Living With SMA
25: Unleashing The Potential of Sport
Welcome 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...
2023-02-23
50 min
Devoid of Space
A Good Morning and a Great Afternoon
It 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...
2023-02-14
28 min
Living With SMA
24: How to surprise your family at Christmas
Welcome 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...
2022-12-21
37 min
Living With SMA
Ep23: Social Media
Welcome 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...
2022-11-30
51 min
Living With SMA
22 - The Right Mindset
Welcome 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...
2022-11-11
52 min
Living With SMA
21 - Part 2: Higher Education, University & the transition Into employment
Welcome 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_...
2022-10-07
22 min
Living With SMA
21 - Part 1: Higher Education, University & the transition into employment
Welcome 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...
2022-10-06
26 min
Living With SMA
20 - Part 3: Disability & Education
Welcome 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...
2022-09-23
18 min
Living With SMA
20 - Part 2: Disability & Education
Welcome 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...
2022-09-22
10 min
Living With SMA
20 - Part 1: Disability & Education
Welcome 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...
2022-09-21
15 min
Living With SMA
19 - Part 4: SMA Life Through The Ages
Welcome 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...
2022-08-26
15 min
Living With SMA
19 - Part 3: SMA Life Through The Ages
Welcome 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...
2022-08-25
11 min
Living With SMA
19 - Part 2: SMA Life Through The Ages
Welcome 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...
2022-08-24
18 min
Living With SMA
19 - Part 1: SMA Life Through The Ages
Welcome 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...
2022-08-23
15 min
Living With SMA
18 - Part 3: You've Got a Friend in Me
Welcome 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.
2022-07-22
09 min