Chair of Translational Neuroscience, ERC Advanced Investigator, Director of Research and Innovation - University of Sheffield Department of Neuroscience.
Professor Azzouz has a long standing interest in developing gene therapy approaches for neurodegenerative diseases His research focuses on new therapeutic strategies for monogenic neuromuscular disorders and other motor neuron diseases.
Doctor Jennifer Hirst
Principal Research Associate, Robinson Labs, Cambridge Institute for Medical Research
Jenny is a cell biologist who had previously discovered the AP4 and AP5 adaptor complexes and has been studying their function and link with Hereditary Spastic Paraplegia.
Professor John Fink
Professor in the Department of Neurology and Director of Neurogentic Disorders Program at the University of Michigan.
Professor Fink is committed to finding the causes and developing treatments for Hereditary Spastic Paraplegias. John is the one of the world leaders in HSP.
Dr Craig Blackstone
Senior Investigator, Cell biology section at the National Institute of Neurological disorders and strokes.
Dr Blackstone’s laboratory investigates the cellular and molecular mechanisms underlying hereditary movement disorders. Craig is one of the most prominent HSP researchers in the world.
Dr Evan Reid
Medical Genetics and Principal Investigator, Cambridge Institute of medical research
Dr Reid’s Lab studies are focusing on understanding the molecular pathology of the hereditary Spastic Paraplegias.
Professor Henry Houlden
Professor of Neurology, Faculty of Brain sciences, National Hospital of Neurology, Queens Square, London
Professor Houlden runs a research group that are interested in ALL Neurogenetics. Seeing Hereditary Spastic Paraplegia patients is a main interest to Henry.
Founder, CEO & Maddi’s Mum
I am proud to be Maddi’s mum and I set up The Maddi Foundation after Maddi was diagnosed with SPG15.
There is no other charity out there funding research for a cure into Spastic Paraplegia Gene 15. I realised that our only hope was to start one ourselves to help raise the profile and awareness into this rare disease.
I gave up working in the florist industry to set up The Maddi Foundation with my other daughter Alexandra.
Co Founder, Trustee & Maddi’s sister
Alex, Maddi’s sister, is Co Founder of the charity and has worked hard alongside her mum in fundraising and campaigning since Maddi was diagnosed with SPG15. Having supported Maddi through the toughest of times since her diagnosis, Alex is keen to raise awareness of the Maddi Foundation to help both her sister and all others that suffer with Spastic Paraplegia types. Alex works within the business advisory and insolvency industry.
The Maddi Foundation means a lot to me as my son grew up with Maddi and I was so shocked when she was diagnosed with such a rare disease that had no answers or no cure. After seeing the impact it had on Maddis family, I wanted to help them raise awareness and fundraise into research for a cure for SPG15. I was delighted to be asked to join the team in a fundraising support role and feel honoured to be part of the special charity.
Trustee & Maddi’s Brother
Harry – Maddi’s brother who decided to become a Trustee for The Maddi Foundation having watched his little sister go through a very tough time with the disease. I have been involved in raising awareness and fundraising since she was diagnosed.
I am the director of an electrical company based in Essex, UK.
Glen Murphy MBE
Glen – is an English actor, producer and sports therapist. Best known for his role as firefighter George Green in Londons Burning. He was awarded an MBE in 2007 for his charity work and also qualified as a sports therapist in 2014, he has clinics based in Essex and Italy.
Having knowing Maddi and her family for quite sometime he has watched the progression in the disease and was inspired by Maddi’s courage and determination of fighting SPG15 he felt privileged to be asked to come on board as a trustee.
Every penny counts. Your generosity will fund vital research and treatment efforts in the hope of not only stopping progression of SPG15 but also finding a cure. This will open the doors hopefully to help other similar orphan diseases. Donate to be part of a cure.