Living With SMA

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 even...

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 ye...

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 the...

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 passio...

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...

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 s...

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, compas...

Welcome back to our podcast, where we continue to explore the fascinating journey of transitioning into school. In this special episode, we shift our focus to the next stage: transitioning from primary to secondary school.Join us as we dive deeper into this significant milestone in a child's educational journey. We'll hear from Grace McManus (mum of Sonny who lives with SMA) and our host Ross Lannon who share their insights and experiences on the social, emotional, and academic aspects of tra...

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...

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 ina...

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 ...

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:&n...

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 ...

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 sha...

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...

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 Universi...

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 chann...

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 chann...

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....

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.#Living...

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 ...

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...

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 #SMALife...

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...

Welcome 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 ⬇️⬇️twitt...

Welcome 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 medi...

Welcome 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...

Welcome 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: t...

Welcome 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 fu...

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 sha...

Welcome 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...

Welcome 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 an...

Welcome 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 rar...

SMA 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 UK please email us at con...

In 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.instagr...

Welcome 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 ...

Welcome 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 cha...

Chris 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 connection...

SMA 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/SpinalMuscular...

SMA 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

SMA 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

SMA 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...

Following 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

SMA 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 lik...

SMA UK Hosts Josh Wintersgill, Becca Torricelli and Emma Vogelmann talk about mental health and wellbeing during the pandemic, sharing their own personal views and individual stories.