Joseph Irwin became a Member of Spinal Muscular Atrophy Support UK (previously The Jennifer Trust for Spinal Muscular Atrophy) after his first son Toby was diagnosed with Type I SMA. Joseph, who is a biochemist-pharmacologist with molecular biology and cell biology experience, has worked for many years in hospital based research and for the pharmaceutical industry.
Joseph is a consultant on regulatory matters, using his experience with the pharmaceutical industry Joseph was part of the JTSMA Research Committee and their first Honorary Director of Research as well as a past Trustee. Joseph supports the Paediatric Task Force for the European Organisation for Rare Disorders (EURORDIS). Joseph has continued to support organizations working in rare neuromuscular diseases often providing pro bono regulatory support and advice.
Joseph has been an active member of Spinal Muscular Atrophy Support UK (previously the Jennifer Trust for Spinal Muscular Atrophy) for almost 30 years. As treatments have become available the process of assessment of eligibility for reimbursement has required sma individuals and families to lobby government, NHS and NICE directly to be heard. This has resulted in the formation of Treatsma.uk who as SMA individuals and families directly canvess for access to treatments working with recognised charities like SMA Support UK and MDUK.
The condition affects people of all ages, race or background. Spinal Muscular Atrophy Support UK aims to provide support to any child, adult or family affected by SMA (www.smasupportuk.org.uk)