Trustee Board: Recruiting for condition-specific representatives

Lucy Watts with assistance dog Molly

Since we became Pathfinders Neuromuscular Alliance, we’ve thought a lot about how to ensure that our trustee board brings the skills and experience we rely on, while also representing as many of our members as possible. We already have an excellent board of trustees, but as a charity representing the wider community of people with […]

Comedy & Cocktails – a Pathfinders Fundraiser

Pathfinders is delighted to announce a night of comedy and cocktails on Thursday 10th June – headlined by Britain’s Got Talent winner, Lost Voice Guy – the first stand-up comedian to use a communication aid. Tickets are available now Our work relies on fundraising in order to keep doing what we do – and you […]

Mark Chapman – Our New Honorary President

A photo of Mark Chapman with the Pathfinders Lifetime Achievement Award

Our co-founder Mark Chapman has retired from his role of Chair of the Board of Trustees for Pathfinders Neuromuscular Alliance, and named our first Honorary President in recognition of his service to the charity. Having been involved in Pathfinders since he co-founded it alongside CEO Jon Rey-Hastie in 2014, at the Trustee Board meeting on […]

Feeding Tube FAQ

A diagram of a PEG feeding tube

What is a feeding tube, and why might you need one? A feeding tube delivers a nutrient feed directly into the stomach, allowing an adult with a neuromuscular disorder to meet their nutritional needs without having to chew and swallow food. There are three main reasons why adults with neuromuscular disorders may require a feeding tube: […]

Duchenne Nutrition Timeline

circular green text saying Healthy Eating surrounding two apples and a banana in the shape of a smiley face

As Duchenne progresses, nutritional issues also change. During childhood, especially when steroids are used and at the time when children start using a wheelchair, there is a particular risk of obesity which can impede breathing and reduce muscle function and mobility. Dietary advice to assist with maintaining a healthy weight is required. In teenage or […]

How to Eat a Healthy Diet

text saying Healthy diet over a grid showing various cartoon styled foods

In general, adults with neuromuscular disorders should strive to have a healthy diet balanced in energy, protein, fluid, calcium, vitamin D, and other nutrients. Adults should aim to include a variety of foods from the five main food groups: fruit; vegetables; meat, poultry and alternatives; dairy and breads and cereals. MICRO-NUTRIENTSAdults are at risk of […]

Nutraceuticals and dietary supplements in DMD

A photo of various Probiotics, pills, and dietary supplements

There have been a range of nutritional supplements investigated in boys with DMD. The most promising supplement is creatine monohydrate. A systematic literature review (considered the highest level of evidence) demonstrated that creatine supplementation had some short to medium term benefits with regard to strength and muscle mass in Muscular Dystrophy (Davidson et. al., 2015). […]

Maintaining a healthy weight

A photo of stand on style weighing scales

Energy balance is an important concept for understanding weight management. The body uses energy all the time, even when at rest or sleep. Energy balance is when the energy obtained from diet (measured in calories) meets the energy that the body needs. As an individual with neuromuscular disorders stops walking, energy needs often decrease making […]

Mounting smart-phones and tablets to your wheelchair

A photo of a standard manual wheelchair with a Daessy Mount attached

Mounting solutions in order to use a smart phone or tablet, it can be useful to mount the device, fixing it in position on a wheelchair or bed. There are many ways to do this – mounts from accessible technology or mobility shops will generally be around £300-£700 and mounts on Amazon or Ebay around £20 – […]

Managing Bowels and Constipation

Lots of different fruits and vegetables

Constipation is a common symptom for both children and adults with DMD and other neuromuscular disorders and can be very uncomfortable and dangerous if untreated (Kraus et. al. 2016). Although comparatively less studied than the muscles involved in chewing and swallowing, muscles involved in defecating (pooing/pooping) can also be severely affected by Duchenne. It has been shown that food […]