On Rare Disease Day, watch Eli Crossley, son of our friend and Duchenne UK co-founder Emily, as he talks about – and demonstrates – the amazing technological developments that are being trialled for children with Duchenne muscular dystrophy. The ‘smart...
We are delighted that the ground-breaking KineDMD activity monitoring study we funded has been published in the prestigious scientific journal Nature Medicine. As the publication succinctly states: “Artificial intelligence has the potential to revolutionise...
We are pleased to share that Solid Biosciences has completed its acquisition of gene therapy company AavantiBio, to create a genetic medicine company focused on neuromuscular and cardiac rare disease, with a continued, strong focus on Duchenne. At this pivotal moment...
DMD Care UK’s new cardiac care recommendations have been published in the BMJ Open Heart journal. All Duchenne parents and caregivers are being urged to read the new guidance and share with their networks, as protecting the heart early is crucial to preventing...
Solid Biosciences has announced its entry into a definitive merger agreement to acquire AavantiBio, to create a genetic medicines company focused on neuromuscular and cardiac rare diseases, maintaining a strong focus on Duchenne. In a letter to the Duchenne community,...
Dedicated specialist support for Duchenne muscular dystrophy (DMD) patients and families’ mental health and wellbeing will soon be more readily available, as part of the DMD Care UK project. DMD Care UK is a nationwide initiative aiming to ensure that every person...
The DMD Hub is launching the Central Recritment Pilot Project, aiming to create a database of families interested in take part in clinical trials. On Thursday 31st March 2022, 7-8pm, Dr Michela Guglieri (Consultant Neurologist at Newcastle University and Newcastle...
We are pleased to share Solid Biosciences’ latest update on the IGNITE DMD gene therapy clinical trial. Data after two years suggests that patients’ motor function and lung function are improved compared to the declines that would be expected without...
An ‘In Case of Emergency’ app has been launched for Duchenne patients and their families, as part of the DMD Care UK project spearheaded by Duchenne UK and the University of Newcastle. The Duchenne Research Fund is proud to be a funder and supporter of DMD...
The Duchenne Research Fund is pleased to share an update on the Parent Project Muscular Dystrophy (PPMD) project we funded in the United States to address neurobehavioural and psychosocial issues in Duchenne. In 2021 we awarded an £80,000 grant to PPMD to support its...
