Grant to advance research into common inherited nerve disorder

Happy disabled boy a on wheelchair is play and learn in the outdoor park with other people

A new study led by the Murdoch Children’s Research Institute has received funding to advance research into Charcot-Marie-Tooth (CMT) disease, the most common inherited nerve disorder.

The study secured a $10,000 CMT Australia research grant to better understand how to manage the condition in children and adolescents.

Murdoch Children’s Dr Rachel Kennedy will lead the study that aims to explore the role of exercise and nutrition in the management of paediatric CMT symptoms and develop exercise guidelines to better treat this condition.  

CMT is a lifelong degenerative condition that causes damage to the nerves, muscle weakness, sensory problems and difficulty walking, which usually start during childhood and progress over time.

Although there is no cure, people with CMT can use a variety of therapies and strategies to help manage their symptoms.  

“Evidence suggests exercise and Body Mass Index can lessen the effects of disease and disability in children with CMT,” Dr Kennedy said. 

“However, exercise is not universally acknowledged or encouraged as a valid therapy by clinicians, and there are no formal exercise guidelines or readily available evidence-based education for CMT.”

Dr Kennedy said formal guidelines and resources were urgently needed to help families and healthcare clinicians make informed choices around exercise for children with CMT.

Run in collaboration with CMT Australia, The Royal Children’s Hospital, The Children's Hospital at Westmead and Queensland Children's Hospital, the study will recruit children, families and community-based healthcare clinicians.

Dr Kennedy said she hoped this study would encourage greater uptake of physical activity and nutritional awareness for children, families and clinicians and help manage disability in children with CMT.

The study builds on recommendations from world-first clinical practice guidelines on CMT management developed by the Murdoch Children’s and international collaborators.

Dr Kennedy aims to raise an additional $9,734 through the crowdfunding platform Crowd Raiser to fund her research. To learn more, please click here