News
JWMDRC
Ten Year Anniversary Celebration
On 24th-25th November the John Walton Neuromuscular Dystrophy Centre, home of the BMD Hub, celebrated it’s 10 year anniversary in Newcastle upon Tyne.
Over the last decade the centre has been performing translational research to bring diagnosis, care and therapy to people with neuromuscular disease. The conference reflected on the last ten years of success. We also explored exciting developments, and looked forward to what the next ten years of work may bring to the neuromuscular field.
The conference was arranged around the centres four strands of work, featuring exciting lectures from staff at the JWMDRC and panel discussions including leading neuromuscular experts.
The programme featured talks on the following topics:
- Advancing neuromuscular diseases through research
- Clinical Research for patients with neuromuscular diseases
- Diagnostic & Clinical Services for patients with neuromuscular diseases
- National & international networking initiatives
“It was fantastic to celebrate the achievements of the John Walton Muscular Dystrophy Research Centre from the past 10 years with our team members, close collaborators and friends. I’m extremely proud that all the excellent talks were given by our early career researchers and health care professionals. I also very much enjoyed the inspiring panel discussions and would like to thank David Burn and Chris Day for their encouraging messages to our team.” – Professor Volker Straub, Director John Walton Muscular Dystrophy Research Centre
BMD guidelines are now available in Italian, Spanish, English, Dutch, German and French
In collaboration with Parent Project, a patient and parent association supporting those affected by Duchenne and Becker muscular dystrophy, TREAT-NMD has coordinated the translation of the BMD guidelines into Spanish and, more recently, into Dutch, German, and French. Parent Project also managed the translation into English, ensuring the document is accessible to a broad international audience.
The publication, the result of a strong need expressed by the patient community itself, was created in Italian by Parent Project in 2021 thanks to the contribution of many specialists who have been involved in patient care for years, with the coordination of Prof. Elena Pegoraro of the Department of Neuroscience from the University of Padua.
The document – titled Diagnosis and management of Becker muscular dystrophy. Guide for families – is available in digital format, downloadable from the TREAT-NMD website and touches on all the most important aspects of the clinical management of the pathology, with attention also to the psychological and social sphere.
MDUK Virtual Information Seminar:
Becker Muscular Dystrophy
In October we took part in a BMD focused webinar organised by MDUK. The webinar was aimed at those living with BMD and their families/carers. We heard from experts about progress into research and key points about living with and managing the condition.
We were represented by Abby Scott (BMD Hub Project Manager) and Prof. Michela Guglieri (BMD Hub Principal Investigator/Clinical Strand Lead), who presented on the BMD Hub and Central Recruitment Database.
The session also included a Q&A session where the panel answered questions covering a range of BMD topics including; questions on genetics, diagnosis and BMD carriers.
The panellists included:
- Professor Hermien Kan – Associate Professor and Vice Director of the C.J. Gorter MRI Center
- David Hick – Singer, songwriter and musician, who lives with Becker Muscular Dystrophy
- Dr Konstantinos Savvatis – Consultant Cardiologist
- Katie Nevin – Clinical Specialist Physiotherapist in Neuromuscular Disorders
- Sarah D’Urso – Paediatric Neuromuscular Physiotherapist
- Keith Robson – Parents perspective
- Professor Michela Guglieri – Professor of Neuromuscular disorders, BMD Hub
- Abby Scott – BMD Hub Project Manager
To watch the webinar online click here.
TREAT-NMD Becker Muscular Dystrophy Education and Engagement Patient Event
TREAT-NMD is a global network connecting neuromuscular communities across the world. With support from patient organisations, TREAT-NMD hosted the first ever Becker Muscular Dystrophy Education and Engagement Patient Event in Europe on 14th September 2024.
The event took place in two locations –
Amsterdam: For patients from the Netherlands, Belgium, France, and the UK.
Milan: For patients from Italy, Spain, and Germany.
The event was delivered in English, with simultaneous translation provided for all attendees based on their country’s language.
It was a unique opportunity for BMD patients, their families, and carers to come together for a day of education, engagement, and empowerment. The Becker European community were able to learn about managing BMD from leading experts but also meet others living with BMD to learn from and support each other.
Sessions were dedicated to the most up to date information on subjects such as the importance of multidisciplinary care and genetic counselling, the psychological aspect of living with BMD, standards of care, transitioning from paediatric to adult services, as well as current and emerging therapies.
The BMD Hub and John Walton Muscular Dystrophy Centre was represented by Prof. Michela Guglieri, Dr Pietro Riguzzi and Chloe Geagan.
MDUK Virtual Information Seminar:
Becker Muscular Dystrophy
MDUK are hosting a 2024 virtual information seminar on Becker Muscular Dystrophy which will take place on Friday 18th October 2024 from 10am to 12pm.
The BMD Hub will be represented by Abby Scott (BMD Hub Project Manager) and Prof. Michela Guglieri (Study Principal Investigator/Clinical Strand Lead). Join us for an informative and supportive webinar focusing on Becker Muscular Dystrophy (BMD). The session will explore the latest research on BMD, along with information and guidance on living well with the condition.
Guest Speakers:
Professor Hermien Kan – Associate Professor and Vice Director of the C.J. Gorter MRI Center.
David Hick – Singer, songwriter and musician, who lives with Becker Muscular Dystrophy. David will be providing a first hand perspective of living with the condition.
Dr Konstantinos Savvatis – Consultant Cardiologist.
Katie Nevin – Clinical Specialist Physiotherapist in Neuromuscular Disorders.
Sarah D’Urso – Paediatric Neuromuscular Physiotherapist
Keith Robson – Parents perspective
Professor Michela Guglieri – Clinical Research Strand Lead, Professor of Neuromuscular Disorders
Abby Scott – BMD Hub Project Manager
For more information and to register click here.
BMD Hub Launch
On the 29th of February, in celebration of Rare Disease Day, the BMD Hub was launched.
Modelled after the successful DMD Hub, a collaboration between Duchenne UK and Newcastle University, the BMD Hub’s goal is to enhance clinical trial readiness in BMD (Becker Muscular Dystrophy) by supporting sites, addressing specific industry needs, linking with the patient community, and promoting more equitable access to clinical research for patients with BMD.
Central to this effort is the establishment of the BMD Hub Central Recruitment Database, a centrally coordinated national recruitment contact database, collecting information from and about people with BMD and their preferences for potential participation in research studies in the UK.
Additionally, through the creation of a network, the BMD Hub aims to bridge educational gaps among healthcare professionals, patients, and families. The BMD Hub website will serve as a valuable resource in achieving this objective.
The BMD Hub was introduced through a webinar for healthcare professional and pharmaceutical industry communities.
The webinar for patients, carers, and families has been postponed and will soon be rescheduled. The date of the event will be communicated soon, please register here and we’ll be in touch with you shortly.
This is a project coordinated by the John Walton Muscular Dystrophy Research Centre at Newcastle University, funded by Edgewise Therapeutics, and collaborating with UK patient organisations with an interest in dystrophinopathies.
