Plongez dans la liste complète des épisodes de Living With SMA. Chaque épisode est catalogué accompagné de descriptions détaillées, ce qui facilite la recherche et l'exploration de sujets spécifiques. Suivez tous les épisodes de votre podcast préféré et ne manquez aucun contenu pertinent.
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Date
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11 Feb 2022
14: SMA Type 3
00:58:01
Welcome to the Living With SMA Podcast. Today SMA UK Host Steve Jones talks to Eden Kent and Josh Wintersgill about SMA Type 3.
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 her final year at the University of East Anglia studying Psychology and also has SMA Type3.
Josh Wintersgill is 28 years old, he was diagnosed with SMA at 18 months old. Josh graduated University in 2015 after studying IT, Management and Business. He worked for a couple of years in cyber security then founded Able Move 3 years ago, working closely within the aviation and travel industries.
Each of our guests today shares their own personal views and individual stories.
If you do have any questions for Steve, Eden, Josh and the team at SMA UK please email us at connections@smauk.org.uk
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.
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 for better accessible housing. Kerry also works part-time for the charity MDUK.
Sue Tucker is 56 years old and has SMA Type 2. Sue has been working in accountancy for a number years and currently lives in Devon.
Clare Gray is 52 years old and has SMA Type 2. Clare has worked in the disability sector for 30 years and currently works for one of the largest charities in the country, Shaw Trust, employed as their Organisational Lead for Disability Advocacy. Clare is a member of the Independent Living Strategy Group, a member of the APPG for Disability and the Professional Advisory Group for the Disability Confident Scheme. In 2018, she joined the Advisory Board for the government think tank at 'Reform' and more recently became a member of the Health Model Advisory Group for DWP and project lead for the Power 100, a publication in its fifth year profiling the most influential disabled people in the UK. Clare has been involved in the APPG Women and Work Committee, contributing to the recent report on Women Returners.
Each of our guests today shares their own personal views and individual stories.
If you do have any questions for Kerry, Sue, Clare and the team at SMA UK please email us at connections@smauk.org.uk
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.
-- 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 brilliant work PAs do, SMA UK would love you to share your pictures and PA stories using the hashtag #ItsNotJustCare , tagging SMA UK on social media and / or emailing: connections@smauk.org.uk
You can contact SMA UK on the following social media platforms ⬇️⬇️
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.
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 people are going wrong.
If you do have any questions for Luis, Jasmine, Ross and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
16 Jun 2022
17-Part 2: About Toilets
00:15:48
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.
If you do have any questions for Luis, Jasmine, Ross and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'About Toilets' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
17 Jun 2022
17-Part 3: About Toilets
00:19:05
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.
If you do have any questions for Luis, Jasmine, Ross and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'About Toilets' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
20 Jul 2022
18 - Part 1: You've Got a Friend in Me
00:18:50
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.
If you do have any questions for Ross, Luis, Connor, Lauren and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'You've Got a Friend in Me' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
21 Jul 2022
18 - Part 2: You've Got a Friend in Me
00:16:39
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.
If you do have any questions for Ross, Luis, Connor, Lauren and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'You've Got a Friend in Me' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
22 Jul 2022
18 - Part 3: You've Got a Friend in Me
00:09:47
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 PA
The 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?
If you do have any questions for Ross, Luis, Connor, Lauren and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'You've Got a Friend in Me' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
23 Aug 2022
19 - Part 1: SMA Life Through The Ages
00:15:07
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.
If you do have any questions for Luis, Becca and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'SMA Life Through the Ages' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
24 Aug 2022
19 - Part 2: SMA Life Through The Ages
00:18:05
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.
If you do have any questions for Luis, Joan and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'SMA Life Through the Ages' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
25 Aug 2022
19 - Part 3: SMA Life Through The Ages
00:11:33
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.
If you do have any questions for Luis, Maxwell and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'SMA Life Through the Ages' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
26 Aug 2022
19 - Part 4: SMA Life Through The Ages
00:15:14
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.
If you do have any questions for Luis, Sonny, Grace and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'SMA Life Through the Ages' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
21 Sep 2022
20 - Part 1: Disability & Education
00:15:01
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.
If you do have any questions for Ross, Sam, Alex and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'Disability & Education' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
22 Sep 2022
20 - Part 2: Disability & Education
00:10:58
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.
If you do have any questions for Ross, Sam, Alex and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'Disability & Education' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
23 Sep 2022
20 - Part 3: Disability & Education
00:18:36
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.
If you do have any questions for Ross, Sam, Alex and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'Disability & Education' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
06 Oct 2022
21 - Part 1: Higher Education, University & the transition into employment
00:26:31
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.
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 go to university, but is doing also in employment and doing a career he loves.
The aim of today's podcast is to share the experiences of Ross, Mia and Steven and to show that regardless of your disability, interests and education, you can still get to where we want to be!
If you do have any questions for Ross, Mia, Steven and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA-'Higher Education, University & the transition into employment' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
07 Oct 2022
21 - Part 2: Higher Education, University & the transition Into employment
00:22:20
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.
If you do have any questions for Ross, Mia, Steven and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA-'Higher Education, University & the transition into employment' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
11 Nov 2022
22 - The Right Mindset
00:52:07
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 SMA This 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 their own personal views and individual stories.
You can contact SMA UK on the following social media platforms ⬇️⬇️
If you do have any questions for Ross, Anna, Luis and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'The Right Mindset' disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
30 Nov 2022
Ep23: Social Media
00:51:24
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. ❤️
If you do have any questions for Ross, Sandie, Maxwell and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
*Living With SMA - 'Social Media' disclaimer:* The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
21 Dec 2022
24: How to surprise your family at Christmas
00:37:28
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. ❤️
If you do have any questions for Ross, Luis, Cath and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
*Living With SMA - 'How to surprise your family at Christmas' disclaimer:* The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
23 Feb 2023
25: Unleashing The Potential of Sport
00:50:09
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 discussing the many ways in which sport can help us achieve our goals, overcome obstacles, and live our best lives.
So if you're ready to be inspired, motivated, and energized by the incredible potential of sport, then this is the episode for you!
*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. ❤️
If you do have any questions for Jack, Luis, Cath and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
*Living With SMA Disclaimer* The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
23 Feb 2023
Care One Year On (PAs Are Not Just for Care Part 2)
00:44:20
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 Canto E Castro, Michaela Hollywood, and Katy Etherington who are directly impacted by the system, as we explore the causes and consequences of the current state of care in the UK.
But we'll also be shining a light on the inspiring efforts of individuals and organizations who are working tirelessly to improve care for all. From innovative new technologies to community-based initiatives, there are glimmers of hope and progress amidst the challenges.
So if you're ready to confront the harsh realities of the state of care in the UK, while also discovering the promising developments and solutions emerging, then join us for this crucial and thought-provoking episode.
Tune in now and let's start a conversation about how we can work together to ensure that every person in the UK receives the care they deserve.
*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. ❤️
If you do have any questions for Ross, Michaela, Katy, Luis, and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
*Living With SMA Disclaimer* The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
02 Apr 2023
Transitioning into School Part 1 (Nursery to Primary)
00:43:29
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 during the transition, and offer strategies for coping and thriving during this time of change.
Through it all, we'll seek to build a deeper understanding of the importance of this transition for a child's growth and development, and how we can work together to support children and families during this exciting and sometimes daunting time.
So if you're a parent or caregiver navigating the transition to primary school, or a teacher or professional working with children during this critical phase, then join us for this engaging and informative episode.
Tune in now and let's explore the many dimensions of transitioning into school from nursery to primary.
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://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...
If you do have any questions for Portia, Charlotte, and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
01 Jun 2023
Ep 28: Transitioning into School Part 2 (Secondary school)
00:29:48
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 transitioning to secondary school.
Building upon our previous discussion on nursery to primary transition, we'll tackle new challenges and opportunities that arise during this period. From navigating a larger school environment to adapting to new subjects and routines, we'll explore the practical considerations and offer strategies to help ease the transition.
Additionally, we'll delve into the emotional dynamics that both students and parents may encounter during this pivotal time. With the right guidance and support, we can empower our children to embrace this new chapter and thrive in their secondary school experience.
So whether you're a parent, educator, or simply curious about the transitional journey, this episode is packed with valuable insights and practical advice. Join us as we continue to uncover the keys to a successful transition from primary to secondary school.
Tune in now and let's embark on this exciting exploration of transitioning into school.
19 Jun 2023
Ep 29: Mental Health and living with a long term condition
00:45:27
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 the challenges of Spinal Muscular Atrophy while simultaneously facing the complexities of mental health.
Through their story, we witness the transformative power of genuine human connection and the incredible impact that compassionate support can have on one's mental well-being. Together, they formed a unique alliance, where their shared experiences and unwavering support became a lifeline in the face of adversity.
In this episode, we'll explore the nuances of their relationship, the challenges they overcame, and the invaluable lessons they learned along the way. We'll also delve into the broader implications for the intersection of mental health and long-term conditions, highlighting the importance of accessible mental health support for all individuals facing similar circumstances.
This episode is an emotional and thought-provoking testament to the profound impact that genuine connection and understanding can have on one's mental health journey. It serves as a reminder that no one should face the challenges of a long-term condition alone.
So, whether you're personally touched by a long-term condition, passionate about mental health advocacy, or simply seeking inspiration and hope, this episode is a must-listen.
Tune in now and join us as we embark on a transformative exploration of mental health and living with a long-term condition, through the remarkable journey of our guests and their connection during their university years.
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://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...
If you do have any questions for Becca or Ellie and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
20 Jul 2023
Ep 30: living with a long term condition and Mental health Part 2
00:46:34
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 as we uncover the strategies, resources, and networks that are available. From discovering supportive communities to accessing professional assistance, we delve into the practical aspects of seeking and receiving the support necessary to navigate the challenges of a long-term condition. Through powerful anecdotes and insightful discussions, we'll share first hand accounts of the triumphs and breakthroughs that were made possible through unwavering support. We'll explore the ways in which support systems can empower individuals, promote resilience, and unlock their full potential. This episode not only showcases the importance of finding support but also highlights the incredible achievements that can be realized when individuals are equipped with the tools and resources they need to thrive. Whether you're personally impacted by a long-term condition, searching for guidance on finding support, or simply seeking inspiration and hope, this episode promises to captivate and enlighten you. Tune in now and join us on this empowering and transformative exploration of mental health and living with a long-term condition. Discover the incredible possibilities that lie within the reach of those who bravely seek support and witness the remarkable achievements that can be attained along the way.
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://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...
If you do have any questions for Becca or Ellie and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
31 Aug 2023
Ep 32 Keep your goals away from the trolls
00:39:56
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 motivation. We'll explore the stories of relentless online attacks, yet she emerged stronger and more determined than ever.
Our guest, Alex, has not only confronted online trolls head-on but has also turned her experiences into a source of empowerment and advocacy. She'll reveal her strategies for safeguarding her goals and mental well-being in the face of adversity. From managing social media platforms to finding support networks, Alex's insights are invaluable for anyone navigating the online landscape.
This episode is a call to action against the toxic culture of trolling, emphasizing the importance of resilience, self-care, and building a positive digital community. It's a testament to the indomitable human spirit that refuses to be silenced by negativity.
Tune in now and join us for a candid and empowering conversation with Alex Dacy as we explore the world of online trolling and the strength it takes to rise above it.
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://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...
If you do have any questions for Becca or Ellie and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
26 Aug 2023
Ep 31 Summer Holidays with SMA
00:45:01
31 Oct 2023
Ep 33: SMA & Advocacy
00:49:14
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 lives of individuals and their families, igniting the flames of their advocacy journey. But this episode is not just about the challenges they face; it's a celebration of their resilience and their unwavering commitment to making a difference. We dive into the diverse mediums they utilize, from heartfelt messages to the simple act of sharing posts, and how these seemingly small actions have a ripple effect that reaches far and wide. Join us as we uncover the inspiring goals they're striving to achieve within the SMA community and beyond. It's a testament to the fact that you don't need to be a loud and proud voice on the front lines to contribute to a cause. Every message, every share, every act of support matters. This episode is a call to action, an invitation to be part of something bigger than ourselves, and a reminder that even the quietest voices can make the most significant impact. Tune in now and be inspired by these remarkable advocates who are changing lives through their dedication and the power of social media.
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://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...
If you would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
28 Nov 2023
Ep34: Positive Mindset & Career Aspirations
00:45:56
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 granted, Sam and Alex's perspective offers a fresh and inspiring outlook.
Join us as we journey through their university experiences, where they've embarked on intriguing projects that showcase their creativity and drive. From navigating the academic landscape to pursuing their unique interests, they share the ups and downs of their educational journey.
But that's not all—Sam and Alex have a dream to write a sitcom based on their misadventures and shenanigans. Their humour and camaraderie shine through as they discuss this exciting project, showing their boundless imagination and determination.
This episode is a reminder that a positive mindset can shape your outlook on life and your career aspirations. Sam and Alex's story is a testament to the power of resilience, determination, and the pursuit of dreams. Tune in now and be inspired by their incredible journey of optimism and ambition.
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://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...
If you would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
26 Dec 2023
Ep: 35 Festivities & Highlights of 2023
00:47:44
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 had on our community. But that's not all—we're also setting our sights on the horizon and diving into our exciting plans for 2024. Whether it's new topics, innovative formats, or engaging collaborations, we'll give you a sneak peek into what the future holds for our podcast. Join us as we wrap up 2023 with laughter, gratitude, and a sprinkle of holiday magic. Whether you're a loyal listener or joining us for the first time, this episode is a warm invitation to reflect, rejoice, and look forward to the adventures that await in the new year. Tune in now and let's spread the festive cheer together! 🎄🎉🎁
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://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...
If you would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA Disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
29 Jan 2024
Ep 36: Resonate 2023 Lookback
00:29:47
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 lifelong friendships to embracing the spirit of adventure, you'll discover the profound impact of these gatherings on their lives.
"Resonate" is a testament to the strength, camaraderie, and unbreakable spirit of individuals living with SMA. It's a reminder that the outdoors is a canvas where dreams are painted, and where life's most meaningful moments come to life.
Tune in to this episode and let the stories of Molly, Ben, Ellie, Sophie, and Alicia resonate with your own sense of adventure and wonder. 🌿🌄✨
#Resonate #OutdoorAdventures #SMACommunity
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://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...
#Resonate #OutdoorAdventures #SMACommunity
If you would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA Disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
08 Mar 2024
Ep37 Transport for All in 2024
00:45:19
28 Mar 2024
Ep 38: #KnowNoBounds making the outdoors more accessible
00:34:57
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 demonstrate that no obstacle is too great to overcome. Their mission not only showcases the limitless potential of individuals living with disabilities but also serves as a powerful reminder of the boundless strength of the human spirit. Tune in as we hear first-hand accounts from Maxwell and Joshua about their motivations, aspirations, and the impact they hope to make through their extraordinary journey. From heart-warming anecdotes to adrenaline-pumping moments, this episode promises to inspire, uplift, and ignite a sense of possibility within us all. Join us as we cheer on Maxwell and Joshua every step of the way, celebrating their courage, resilience, and unwavering determination to reach new heights—both literally and figuratively. Don't miss out on this unforgettable adventure! 🌟🎧 #KnowNoBoundsChallenge #RaceForACause #InspiredByDetermination
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://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...
#Resonate #OutdoorAdventures #SMACommunity
If you would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA Disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
29 May 2024
EP39: Festivals and Gigs
00:42:53
Get ready to roll into the beat of festival vibes with our latest podcast episode, where we explore the world of festivals and gigs through the eyes of wheelchair users Jordanne, Mollie, and Ross, all living with SMA! 🎶✨
Join us as we navigate the highs and lows of festival accessibility, from the thrill of inclusive experiences to the challenges faced by wheelchair users. Jordanne, Molly, and Ross will share their firsthand accounts of navigating festival grounds, accessing venues, and interacting with fellow event organisers.
While the journey may have its bumps along the way, our guests will also shine a spotlight on the positive moments that have lit up their event experiences. From unique and special experiences to the triumph of overcoming accessibility barriers, these stories remind us that every obstacle is an opportunity for growth and empowerment.
So grab your gear, tune into the rhythm of inclusivity, and join us for an insightful exploration of festivals and gigs from a wheelchair user's perspective. This episode promises to be a celebration of resilience, community, and the power of music to unite us all! 💃🕺🎉
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 in which their disabilities and LGBTQIA+ identities have shaped their lives.
Listeners will hear inspiring stories of resilience, advocacy, and joy as our guests talk about what Pride means to them. This episode is a celebration of diversity, inclusion, and the strength found in embracing all aspects of one's identity. Tune in to *Pride and Possibility* for an uplifting conversation that highlights the beauty of living authentically and the importance of solidarity within the LGBTQIA+ and disability communities.
Celebrate Pride with us and discover the incredible stories of Shelby, Emily, and Jordanne as they inspire us all to live with pride and possibility.
HIS 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://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...
If you would like to participate in any of our podcasts please email gary.edgecombe@smauk.org.uk
Living With SMA Disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
04 Oct 2024
Ep 41: Getting ready for Uni
00:33:00
Uni Bound: Navigating University Life with a Disability
In this insightful episode of *Uni Bound*, host Ross Lannon is joined by guests Molly Everitt and Zoe Henderson for a candid discussion on preparing for university while living with a long-term disability. Together, they explore the added pressures of managing university life, from securing accessible accommodations in halls to coordinating support from carers. The conversation dives into the emotional and logistical challenges that disabled students face, while offering practical advice on advocating for your needs, navigating university services, and building a support network. If you're a student with a disability or simply want to understand the complexities of university life from this perspective, this episode provides invaluable insights, empathy, and encouragement.
31 Oct 2024
Ep 42: Uni the practical stuff
00:31:47
Uni Life: Disabled and Thriving*
In this episode, host Ross Lannon is joined by Molly Everitt and Zoe to dive into the real, practical side of university life as a disabled student. Together, they discuss everything from navigating campus accessibility to dealing with accommodations, managing workloads, and finding support networks. With personal stories, tips, and advice, this conversation covers what it’s really like to balance studies, independence, and disability. Whether you're a student or ally, this episode provides insights and practical advice to make university a more inclusive and empowering experience for everyone.
07 Apr 2025
EP:43 - Motherhood, My Way: Parenting with SMA
00:31:54
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 disability, or just want to learn more about inclusive parenting, this video is packed with insights and real-life experiences to support you on your journey.
🔔 Don’t forget to like, comment, and subscribe for more content on living with SMA and thriving as a parent!
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://www.instagram.com/sma_uk ▶ | TWITTER: https://twitter.com/SMA_UK_ ▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul...
If you would like to participate in any of our podcasts please email gary.edgecombe@smauk.org.uk
Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.
03 Mar 2021
1: Mental health and wellbeing during COVID-19 outbreak
00:40:51
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.
07 Apr 2021
2: My Experience of Home Adaptations
00:48:30
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 like more info please browse through out website here: https://bit.ly/3wwfoc4
29 Apr 2021
3: My Experience of Renting
00:28:29
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
20 May 2021
4: Adult Onset SMA
00:33:47
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: https://smauk.org.uk/recent-diagnosis-adult-onset-sma
THE GENETICS OF SMA: https://smauk.org.uk/the-genetics-of-5q-sma
NEUROMUSCULAR CENTRES: Please click on the 'Accessing Physio & OT Support heading for list of centres https://www.livingwithsma.org.uk/adults/posture-movement-exercise-adults
23 Jun 2021
5: Parents Perspective of Diagnosis 25 years ago
00:42:36
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 do have any questions for the team at SMA UK please email us at connections@smauk.org.uk
28 Jul 2021
8: Siblings - Part 2: Chris & Alex
00:27:52
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 do have any questions for Chris, Alex or the team at SMA UK please email us at connections@smauk.org.uk
14 Jul 2021
7: Treatment Part 1: Risdiplam
01:13:42
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.
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.
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….
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 .
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.
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 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 for better accessible housing. Kerry also works part-time for the charity MDUK.
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