Former Little Mix singer Jesy Nelson has brought renewed attention to Spinal Muscular Atrophy, or SMA, after revealing that her twin daughters, Ocean Jade and Story Monroe, were born with SMA Type 1.
She's now campaigning for the condition to be included in the UK's newborn heel prick screening programme.
Here in Ireland, that became a reality in April, with SMA added to the national newborn screening programme after years of campaigning by SMA Ireland. Joining me now is Jonathan O'Grady, who founded the organisation in 2019 after being diagnosed with SMA Type II in 1982, to talk about how far treatment has come and what still needs to be done.
