On Thursday 29th May 2025, SMA UK proudly launched their new children’s book, Spinal Muscular Atrophy: Our SMArt World.
Held in the prestigious Governors Hall at St Thomas’ Hospital in London, the launch event brought together SMA families, along with professionals from healthcare, research, and education.
Our SMArt World is narrated by three individuals living with SMA. Through their stories—and those of others also affected in diverse ways by the condition—the book offers a powerful and personal perspective. It also explains the biology of SMA, how modern treatments work, and why early diagnosis and intervention are so crucial. The aim is to support meaningful conversations between children growing up with SMA and the people around them.
The event marked the culmination of a year-long project and featured live readings by the book’s characters. Attendees also enjoyed a presentation from the book’s designer, who transformed real people, their clinical teams, and equipment into vibrant illustrations.
The SMA UK team shared how the emergence of new treatments has created a need for resources that explain the condition’s complexity, the therapies available, and the range of possible outcomes. They were joined by leading SMA clinicians, who worked closely with the team to ensure scientific accuracy throughout the book.
The afternoon concluded with heartfelt conversations, engaging presentations, and a delightful afternoon tea—bringing together community, collaboration, and celebration.
Childrens author, Andy Jones said,
“There is so much to recommend in this charming and engaging book. The author, illustrator and all involved have created something that speaks both to families affected by SMA and to the healthcare professionals seeking to help them. It captures real patient stories with authenticity and compassion. It’s informative, insightful, and invaluable to anyone working in or affected by spinal muscular atrophy.”
