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.
Read our interview with Maddi Foundation CEO, Carina in Rare Revolution Magazine
The Maddi Foundation was originally organised as the ‘Save Our Maddi Appeal’ in 2016 as shown on social media. Teenager ‘Madeleine Thurgood’ was diagnosed with a life limiting disease called Hereditary Spastic Paraplegia 15 (SPG15). Founder and Maddi’s mum, Carina Thurgood began pushing the necessity of raising awareness of SPG15 and to advance research for Gene Therapy for this rare disease. Efforts began fundraising as ‘Save Our Maddi Appeal’ eventually moved to ‘The Maddi Foundation’, when in 2017 became a registered UK Charity and has since been involved in ongoing collaboration with scientists, researchers and clinicians in search for a cure. The Foundation has already funded research to produce a Gene Therapy project for SPG15 which began in 2017 at a leading University in the UK. Conditions this rare receive very little attention and funding.