Steven Jones · SMA Patient Advocate

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 At CamRARE's RAREsummit26 at the Wellcome Genome Campus, Steven spoke about life with SMA Type 3 and four years on nusinersen. He described how starting treatment reconnected him with specialist care he had effectively lost access to for almost a decade, and argued that treatment is necessary but not sufficient for a full adult life with SMA.

He closed with three calls for change: standard specialist care for every adult with SMA, whether or not they are on treatment; SMA newborn screening in all four UK nations; and recognising the human cost of waiting for funding decisions, after seven years of uncertainty before SMA treatments were permanently funded on the NHS.

Steven attended the Cure SMA Annual Conference, the largest SMA conference in the world. Sessions ranged from practical approaches to managing SMA day to day to an in-depth look at the drug pipeline.

His biggest takeaway was the transatlantic conversation. The US and UK differ in how care is structured, treatments are accessed and advocacy is organised, but the challenges families face, and the hope the pipeline brings, are strikingly similar.

In "I can just get in the car and go", Steven talks to Motability Lifestyle about independence, 16 years on the Motability Scheme, bringing lived experience of disability into policy, and taking on the world's fastest zip line for SMA UK. His philosophy: "Control what you can, and don't worry about what you can't."

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 Steven took on Velocity in North Wales, the world's fastest zip line, to raise money for SMA UK. Together with the Denham Green Quiz & Raffle, which raised £1,743, the challenge brought in £3,289. SMA UK relies almost entirely on voluntary donations to fund research, family support and awareness, so every pound makes a difference.

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Steven wrote the welcome article for SMA Matters, SMA UK's magazine, in its 40th anniversary edition. He describes how, for most of his life, SMA was "just something I got on with", until growing fatigue and muscle weakness meant he needed to actively manage it, and how getting involved with SMA UK connected him with people who really understand life with SMA.

He also reflects on how far the community has come. Treatment was once talked about as "something for future generations, not in my lifetime"; now there are drug options, ongoing trials and far more awareness of what living with SMA means.

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Steven spoke in the Patient Experience: Nusinersen session at the 21st Annual Meeting of the Oligonucleotide Therapeutics Society (OTS), alongside scientists and clinicians developing RNA and DNA-based therapies. He talked candidly about deciding to start treatment as an adult, the realities of lumbar puncture injections, and balancing treatment with work and independent living.

He described how nusinersen has stabilised his condition, reduced fatigue and leg pain, and restored a sense of control and hope for the future. The meeting's co-chair later singled out Steven's meeting with Adrian Krainer, whose research led to nusinersen, as a moving highlight.

Steven joined SMA UK's Big Weekend: Forty and Forward, a three-day conference celebrating the charity's 40th anniversary and its first since 2018. The weekend brought the SMA community together with clinicians and organisations for talks, panel discussions and social events.

For Steven, the highlight was "being in a room full of people who just 'get it'": sharing experiences, socialising and seeing the strength of the SMA community.

Steven took part in SMA UK’s adult advocacy workshop for SMA Care UK, a project creating agreed standards of care for people living with SMA. Adults with SMA and expert clinicians worked together on what adults need from clinical services, what clinicians can learn from day-to-day experience, and where services fall short.

The new standards are designed to be used to advocate for better care, with a holistic approach that supports adults to live independently.