We are proud to announce that we have chosen to support The Maddi Foundation as our Charity of the Year for 2024.
Established in 2016 as the ‘Save Our Maddi Appeal,’ The Maddi Foundation emerged in response to Madeleine Thurgood’s diagnosis of Hereditary Spastic Paraplegia 15 (SPG15), making her the first in the UK with this rare condition. SPG15 is a rare, progressive neurological disease that mirrors motor neuron disease/ALS. The Foundation’s co-founder and Maddi’s mother Carina Thurgood passionately advocates for raising awareness of SPG15, driving the charity’s commitment to advancing research and developing a gene therapy for this rare genetic disease.
People with SPG15 can experience progressive muscle weakness, leading to difficulty walking and meaning they may become wheelchair dependant. The loss of nerve cells in different parts of the brain can lead to additional symptoms such as dementia or juvenile Parkinson’s. Some individuals with SPG15 also have problems with the retina in the eyes, which can cause visual impairment and affect quality of life. The severity of each of these symptoms is variable in affected individuals.
The Maddi Foundation is changing the path of rare disease and working on finding a cure for SPG15. The Foundation made a grant to Professor Mimoun Azzouz to investigate gene therapy for SPG15, evaluating the efficacy of various viral vectors in delivering therapeutic ZFYVE26 genes to brain cells.
Professor Alan Boyd, CEO of Boyds, comments: “We are delighted to announce The Maddi Foundation as our Charity of the Year for 2024. We are looking forward to raising awareness of SPG15 and hosting a number of fundraising initiatives for the charity throughout the rest of the fiscal year including a cake bake fundraiser and an ultra-challenge walk in the Lake District. Boyds will also work closely with The Maddi Foundation, drawing on our specialist expertise to support its commitment to advancing research and developing a gene therapy.”
To find out more about The Maddi Foundation, click here.
