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 #SpinalMuscularAtrophy Watch this episode on our YouTube channel...

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...

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 ...

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...

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...

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 ...

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...

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...

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...

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:       ...

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:         twitter.com/SMA_UK_ Facebook: ...

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 future and...

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...

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, most...

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 and is in...

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 rare form of Muscular...

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...

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 [email protected] Twitter: https://twitter.com/SMA_UK_ Facebook: https://www.facebook.com/SpinalMuscularAtrophyUK Instagram:...

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 SMA Type 2...

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 channel...

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...

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 [email protected] Twitter: https://twitter.com/SMA_UK_ Facebook:...

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 [email protected]

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 [email protected]

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...