Giles LomaxSector leader

Biography

Giles Lomax has been Chief Executive Officer of Spinal Muscular Atrophy UK (SMA UK) since May 2023, taking over from Angela Smith-Morgan. Before joining SMA UK, he spent over twelve years working within several national governing bodies for sport and a not-for-profit local authority, holding board positions across multiple organisations including as an independent director with Scottish Fencing and as Head of Participation at Triathlon Scotland. He brings personal experience of SMA to the role as the father of twins who both have SMA Type 2, having been involved with the SMA community and the charity since their birth in 2018. Lomax has been a leading public voice in the campaign for newborn screening for SMA in the UK, welcoming the UK government's 2026 announcement of a national screening evaluation programme across England and welcoming Scotland's 2026 screening pilot. SMA UK, registered charity no. 1106815, is the national charity dedicated to supporting anyone affected by SMA, providing information, advocacy, and research support.

References

1. 1.Giles Lomax CEO Announcement – SMA UK — Confirms appointment as CEO from May 2023, previous career in sports governing bodies, and personal connection to SMA as father of twins with SMA Type 2
2. 2.Giles Lomax – SMA UK Staff Page — Confirms current role, organisational affiliation, background and LinkedIn identity
3. 3.Every baby in England to get life-saving genetic test from birth – GOV.UK — Confirms Lomax quoted as CEO of SMA UK welcoming the England-wide newborn screening evaluation programme, July 2026
4. 4.New screening for rare condition in newborns – Scottish Government — Confirms Lomax quoted as SMA UK CEO welcoming Scotland's newborn screening pilot, March 2026
5. 5.SMA UK and Newcastle University partnership announcement – SMA UK

Expertise

Cited on

• Hospital discharge / bed-blocking

Stated areas of expertise

• Newborn screening policy
• Rare disease advocacy
• Access to SMA treatments
• Patient and family support
• Neuromuscular conditions

Notable achievements

• Led SMA UK's sustained campaign for national newborn screening for SMA, resulting in the UK government announcing an England-wide evaluation programme beginning October 2026, three months ahead of the original schedule. Source ↗
• Represented SMA UK in welcoming Scotland's 2026 newborn screening pilot for SMA, the first part of the UK to trial such screening. Source ↗
• Led SMA UK's partnership with Newcastle University and the John Walton Muscular Dystrophy Research Centre on the SMA Care UK project to advance care recommendations for people living with SMA. Source ↗
• Attended a parliamentary roundtable at Westminster to launch the 'Every Moment Matters' policy report on implementing newborn screening for SMA in the UK, meeting MPs and introducing SMA-affected families. Source ↗

What they’ve said

• “Every month another four babies are diagnosed with SMA and the clock is always ticking. With all three treatments now routinely available through NHS Scotland alongside newborn screening, the future for anyone diagnosed with SMA is very different compared to their peers who were diagnosed symptomatically. It basically gives children the life they deserve.”

  chief executive of the charity SMA UK · Hospital discharge / bed-blocking · 27 Aug 2026 · Scotland becomes first part of UK to screen newborns for spinal muscular atrophy ↗

• “This is a historic moment for the SMA community. After years of uncertainty, people can finally feel confident that these treatments will remain available on the NHS.”

  chief executive of SMA UK · Hospital discharge / bed-blocking · 27 Aug 2026 · NHS drugs go-ahead offers lifeline to children with rare muscle-wasting disease ↗

• “This is a hugely important step forward. When newborn screening for SMA begins later this year in October, thousands of babies will benefit from earlier diagnosis and access to life-changing treatment.”

  chief executive of Spinal Muscular Atrophy UK · Hospital discharge / bed-blocking · 27 Aug 2026 · All newborns in England to be screened for spinal muscular atrophy from 2027 ↗

Source references

1. Scotland becomes first part of UK to screen newborns for spinal muscular atrophytheguardian.com · 27 Aug 2026
2. NHS drugs go-ahead offers lifeline to children with rare muscle-wasting diseasetheguardian.com · 27 Aug 2026
3. All newborns in England to be screened for spinal muscular atrophy from 2027theguardian.com · 27 Aug 2026

Contact & links

• Staff pagehttps://smauk.org.uk/team/giles-lomax/
• LinkedInhttps://uk.linkedin.com/in/giles-lomax-58a23b33published here ↗
• Websitehttps://smauk.org.uk/contact/

Organisational contact points only, each taken from a page the organisation publishes itself. No personal or direct contact details are held or shown.