DMD research

We’re pleased to announce the appointment of Dr Laurie Cave and Vasiliki Ioannidou to our diet and nutrition project

The project, which is led by Dr Jarod Wong, consultant paediatric endocrinologist at the Royal Hospital for Children, Glasgow, aims to increase understanding of diet and nutritional needs in people with Duchenne muscular dystrophy (DMD) so that guidance and resources can be developed. It will also look into the impact of steroids on weight.

The project will address the current lack of resources and guidance for DMD diet and nutritional management by providing guidelines for registered dieticians to create specific nutritional plans for people with DMD.

Dr Laurie Cave has been appointed as the lead clinical research dietitian. She brings with her years of experience of working in public health nutrition and as a paediatric dietitian, specialising in the care of children with another rare genetic long-term condition, cystic fibrosis.

Her PhD focused on developing an online nutrition education programme for children with cystic fibrosis, based on the needs and preferences of children, parents and dietitians. She has extensive experience in developing nutritional guidance and resources at a national and international level. 

Laurie will co-lead the nutrition working group with Dr Jarod Wong. In this role, she will lead on developing accurate and accessible nutrition information for DMD, develop UK national recommendations and hold drop-in nutrition group sessions for young people with DMD, families, and other healthcare professionals. She says:

“I am very excited to begin this post and look forward to working with young people, their families, clinicians, and researchers, to support and advance better nutritional care in DMD.”

Vasiliki Ioannidou has been appointed as the research assistant for the project and its partners. Vasiliki is a dietician and nutritionist with a post-graduate qualification specialising in Clinical Nutrition. In addition to developing and conducting research in the area of nutrition, she is also passionate about developing accurate and easy-to-understand nutritional information for people with a wide variety of conditions.

Vasiliki will conduct research to study nutritional outcomes in ambulant and non-ambulant boys with DMD. She will perform the research supervised by Dr Wong and in conjunction with a post-graduate research student. The research will help shape nutritional recommendations and will be open to boys with DMD all over the UK. She says:

“Improving the lives of people living with serious conditions by offering optimal nutrition care is one of the main reasons that motivated me to pursue a career in clinical nutrition. I am very excited to be able to contribute to this exciting research project and am very grateful to Duchenne UK for funding my position.”

Community support for project

The need for and importance of the project is reflected in the wide range of donors who are helping fund and support it.

The following charities have been instrumental in helping this project to happen: Joining Jack, Alex’s Wish, and the Family and Friends Funds: Backing Jack, Help Harry, Jack’s Mission, Jacobi’s Wish, Project GO, Smile with Shiv, Team Felix and Access to Life.

Emma Hallam, Founder of Alex’s Wish and mum to Alex (aged 17) living with DMD, says:

“As a charity we jumped at the chance of supporting this important project. Alex has always battled with his weight due to being on steroids since he was 4 years old, coupled with not being able to exercise due to his condition. We recognise that there is definitely a gap in knowledge across the NHS, and feel this project will benefit so many families.”

You can find out more about the project here.