Making breathing easier – a visit to Royal Brompton’s respiratory clinic

Yesterday afternoon I went to the Royal Brompton hospital to attend Anita Simonds’ respiratory clinic for children with neuromuscular conditions. Respiratory issues – such as recurrent chest infections – affect lots of people with neuromuscular conditions but are most common in children with more severe conditions such as Duchenne or Spinal Muscular Atrophy (SMA). These … Continue reading

Discussing regulatory barriers at the Duchenne Breakthrough Research Fund Launch

On Saturday I was delighted to be asked to give a talk about the regulatory barriers in accessing medicines at the North West launch of the Duchenne Breakthrough Research Fund. At the launch Neil Bennett from our research team gave a really interesting presentation on the developments in potential treatments for Duchenne Muscular Dystrophy with … Continue reading

Working with Great Ormond Street to improve services

Following on from the Ombudsman’s report, published last year, into the tragic death of Arvind Jain, we have been working closely with the Jain family and Great Ormond Street Hospital as they bring in measures to improve the service they provide to people with a neuromuscular condition. We went with the Jain family to meet … Continue reading