The Maddi Foundation was originally started as ‘Save Our Maddi Appeal’ in 2016 when teenager ‘Madeleine Thurgood’ was diagnosed with a life limiting genetic disease called Hereditary Spastic Paraplegia 15 (SPG15). Maddi’s mum and Co-Founder, Carina Thurgood began pushing the necessity of raising awareness of SPG15, to advance research and developement of a Gene Therapy for this rare disease.
Since Maddi’s diagnosis the Foundation have been actively involved in ongoing collaboration with scientists, researchers and clinicians across the UK, USA and Europe to develop a Gene Therapy. The Foundation are aiming to raise £2,500,000 to fund this vital research and have already provided and funded the intial stages of the research for a ‘Proof of Concept’ towards this treatment to halt the disease. Funds will be used to manufacture the therapy and clinical trials for Maddi and others suffering from this disease.
By working to find a cure for one rare disease like SPG15 we will be helping those suffering from many other genetic rare diseases.
Read our interview with Maddi Foundation CEO, Carina in Rare Revolution Magazine
International Registry for SPG11 & SPG15
SPATAX has recently launched an international registry for the natural history of SPG11 and SPG15 patients (NAT-HIS SPG 11/15). NATHIS SPG11/15 aims to identify SPG11/15 prevalence, to understand the pathologies and management of symptoms.
All data reported will be visible to anyone who requests an access and includes patients. This project will permit an important improvement in the knowledge of the natural history of SPG11 and SPG15 and potentially improve the treatments currently proposed and to imagine new treatment avenues.