August is SMA Awareness Month, a time to celebrate our community, reflect on how far we’ve come and raise awareness of spinal muscular atrophy. This year, we’re marking the month with our Every Piece of the Puzzle campaign, celebrating the people, partnerships and milestones that have shaped SMA UK and the wider SMA community. Throughout the month, we’ll be sharing the different pieces of the puzzle that have helped us become the organisation we are today. Our first piece of the puzzle looks back at our own story, from our beginnings in 1985 to the national charity we are today, and the incredible people whose determination, compassion and vision made it all possible.
Since 1985, SMA UK has been at the heart of the UK SMA community, evolving alongside advances in research, treatment and the needs of people living with spinal muscular atrophy.
Our story began with The Jennifer Trust, founded by Anita Macaulay after the loss of her daughter Jennifer to SMA Type 1. Determined that no family should face SMA alone, Anita created an organisation dedicated to providing support, information and hope for those affected by the condition. Anita’s early work was with the research community. She set out to encourage them to start looking into SMA. As a result of her determination there is now a flourishing research effort to find, not just a cure but networks and mechanisms to improve practical management of the condition.
In 2003, The SMA Trust was established to accelerate research into treatments for SMA. Through funding pioneering scientists and collaborating with partners across the UK and Europe, the charity played a significant role in advancing research that helped transform the outlook for people with SMA.
As awareness of the condition grew, The Jennifer Trust became SMA Support UK in 2013, making it easier for newly diagnosed families, healthcare professionals and supporters to find the charity and its services.
A landmark moment came in 2018, when SMA Support UK and The SMA Trust merged to become Spinal Muscular Atrophy UK (SMA UK). Bringing together expertise in support, advocacy and research created one unified national charity with a shared vision: improving the lives of everyone affected by SMA.
Since then, we’ve continued to evolve. In 2022, we became a Charitable Incorporated Organisation (CIO), reflecting the way we engage with our growing community. In 2023, we launched a refreshed brand and website, shaped by people living with SMA, their families and supporters, with a renewed focus on our mission to Support, Inform and Advocate.
Today, we continue to build on more than 40 years of progress, working alongside the SMA community, partner organisations and clinicians to ensure everyone affected by SMA has access to the support, information and advocacy they need, while championing a better future for all.
Thank you to everyone who has made us the organisation we are today.
