Disability Connect

Adult Committee Member for SMA Europe

Spinal Muscular Atrophy UK Adult Advocacy Steering Committee

Steven serves as an Adult Committee Member for SMA Europe, working alongside representatives from across Europe to advocate for adults living with SMA at an international level. This role involves sharing insight on lived experience, contributing to cross-border discussions on treatment access, care standards and inclusion, and supporting a coordinated European voice to influence research, policy and practice for adults with SMA.

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Spinal Muscular Atrophy UK Adult Advocacy Steering Committee

Steven is a member of the Spinal Muscular Atrophy UK Adult Advocacy Steering Committee, where he supports the charity’s work to ensure that the voices of adults living with SMA are heard, represented and reflected in advocacy, policy and service development. Steven contributes to discussions on access to treatment, adult services, standards of care and wider equality issues affecting adults with SMA across the UK.

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21st Annual Meeting of the OTS: October 2025

Steven was invited to speak at the 21st Annual Meeting of the Oligonucleotide Therapeutics Society (OTS) in Budapest, joining scientists, clinicians and patient representatives from around the world to share lived experience alongside the latest developments in RNA and DNA-based therapies.

As part of the Patient Experience: Nusinersen session, Steven shared his personal journey of living with Spinal Muscular Atrophy (SMA) Type 3, reflecting on how his condition has changed over time and what it meant to face, for the first time, the possibility of treatment as an adult. He spoke candidly about the decision-making process around starting nusinersen, the practical realities of lumbar puncture injections, balancing treatment with work and independent living, and the emotional impact of navigating uncertainty.

Steven described how the treatment has helped stabilise his condition, reduce fatigue and leg pain, and—most significantly—restore a sense of control and hope for the future. The session concluded with an open Q&A, giving the scientific community the opportunity to engage directly with patient experience and explore the real-world impact of treatment beyond clinical data.

SMA Podcast with Steven Jones

Talking Men’s Wellbeing While Living With SMA

In this episode of the Living With SMA podcast, Steven, Louis and Ben explore men’s wellbeing and mental health in the context of living with spinal muscular atrophy (SMA). Through honest conversation, they share personal experiences of anxiety, sleep challenges and societal pressures, alongside practical coping strategies. The episode encourages open dialogue, challenges traditional ideas of masculinity and highlights the importance of prioritising mental wellbeing and seeking support.

Living with Spinal Muscular Atrophy (SMA) Type III

In this episode of the Living With SMA podcast, host Steven is joined by Eden Kent and Josh Wintersgill to discuss life with Spinal Muscular Atrophy Type 3. The conversation explores their individual experiences of diagnosis, education, work and independence, highlighting the different ways SMA Type 3 can affect daily life. Through personal stories and reflections, the episode raises awareness of SMA Type 3 and the importance of sharing lived experience to improve understanding and support.

Sharing My Story: The Transition into Employment

In this episode host Ross Lannon is joined by Mia Myers and Steven to explore experiences of higher education and the transition into employment. The discussion looks at how disability can shape decision-making around university, including concerns about accessibility, care needs and travel, as well as broader questions of opportunity and justice. Drawing on three different perspectives, the episode highlights that there is no single route to success and reinforces the message that disabled people can achieve their goals in many different ways.

Celebrating Pride with SMA

In this special Pride episode of Pride and Possibility, host Steven is joined by Shelby, Emily and Jordanne to explore the intersection of disability and LGBTQIA+ identity. Through open and empowering conversation, the guests share their personal journeys, reflecting on representation, community, resilience and what Pride means to them. The episode celebrates diversity, inclusion and the strength that comes from embracing all aspects of identity, offering an uplifting discussion relevant to disabled and non-disabled audiences alike.

An Update on Treatment for Adults who have SMA: October 2023

In this SMA UK webinar, Steven hosts a panel of clinical and commissioning experts to provide an update on treatment for adults living with Spinal Muscular Atrophy (SMA). The discussion covers access to specialist referrals, treatment delivery options, current experiences of side effects, future clinical trials, updates to Standards of Care, and the upcoming NICE review on continued NHS funding. The session offers clear, practical insight into the evolving treatment landscape for adults with SMA and the implications for patients across the UK.

Living with Spinal Muscular Atrophy (SMA)

Steven shares his personal experience of living with Spinal Muscular Atrophy (SMA Type 3), from childhood diagnosis to university, work, driving, and independent living. In this video, he talks about mobility, reasonable adjustments, staying active, and the mindset that has helped him build a positive and fulfilling life with a disability.