Overview
- On Tuesday Jesy Nelson posted a photo celebrating one of her twin daughters sitting upright in her wheelchair and without a feeding tube, framing the moment as a personal milestone in their SMA Type 1 care.
- Nelson disclosed the twins' diagnosis in January and launched a petition that gathered more than 150,000 signatures, which prompted last month's parliamentary debate on newborn SMA testing.
- MPs followed advice from the UK National Screening Committee and approved a staggered national introduction starting in October that will use seven of 13 NHS testing laboratories, leaving some regions without immediate access.
- After the debate Nelson publicly challenged Health Minister Sharon Hodgson, showing video comparisons of treated and untreated children and calling the postcode-based rollout unfair and dangerous for babies who need treatment from birth.
- A trailer for Nelson's Amazon Prime documentary Life Changing was released ahead of its July 17 premiere, keeping pressure on ministers and highlighting that early detection and immediate treatment can markedly change outcomes for infants with SMA.