Giles Lomax: key facts
- Kind of voice
- Sector leader
- Role
- Chief Executive Officer
- Organisation
- Spinal Muscular Atrophy UK (SMA UK)
- Organisation based in
- Stratford-on-Avon
- Quoted on
- Hospital discharge / bed-blocking
- Tracked press citations
- 4
- Most recently quoted
- 4 Oct 2026
Who Giles Lomax is
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.
“Every month, four babies are diagnosed with SMA and for them the clock is ticking every single day. Under the current NHS screening pilot, where a baby is born determines whether they are screened for SMA or not. Babies in London are, while babies in places like Bristol are excluded. That simply isn't fair.”
References for this biography
- 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.Giles Lomax – SMA UK Staff Page — Confirms current role, organisational affiliation, background and LinkedIn identity
- 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.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.SMA UK and Newcastle University partnership announcement – SMA UK — Confirms Lomax as CEO leading partnership with Newcastle University on SMA Care UK project
- 6.Spinal Muscular Atrophy UK – West Northamptonshire Council Local Offer — Confirms SMA UK registered address: Unit 9, Shottery Brook Office Park, Timothy's Bridge Road, Stratford-upon-Avon, CV37 9NR
- 7.Newborn Screening for SMA – SMA UK — Confirms Lomax attended parliamentary roundtable for 'Every Moment Matters' policy report launch
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 Giles Lomax has 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 ↗
Where Giles Lomax has been quoted
- 'Don't let us down Wes Streeting - your decision on SMA will change children's lives'mirror.co.uk · 4 Oct 2026
- Scotland becomes first part of UK to screen newborns for spinal muscular atrophytheguardian.com · 27 Aug 2026
- NHS drugs go-ahead offers lifeline to children with rare muscle-wasting diseasetheguardian.com · 27 Aug 2026
- All newborns in England to be screened for spinal muscular atrophy from 2027theguardian.com · 27 Aug 2026
Related media coverage
Recent UK press coverage of their topics — not necessarily citing them directly.
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.
Chief executives, directors and spokespeople of trade bodies, representative associations and charities speaking for the sector. Citations are counted by an automated scan of UK press coverage and may be incomplete. Roles, biographies and contact details are researched and human-reviewed before they appear here; anything not yet reviewed is simply absent rather than shown unverified. This profile was last updated on 5 Oct 2026. See the methodology for how this page is built, or email contact@bridgeheadcommunications.com to correct anything on it.