Last weekend saw Illingworth attend the Action Duchenne Annual Conference. Action Duchenne focuses on improving the lives of sufferers of Duchenne Muscular Dystrophy. This might be by means of trialling a new drug in a clinical trial or a state of the art mobility equipment, anything which may help support sufferers and their families.
This conference made us all feel very passionate about trying to find a better solution for these sufferers, most of which are young males. We don’t always get the opportunity to meet sufferers and truly understand the limitations and discomforts caused by a condition. This coupled with the condition being rare must leave families with a feeling of hopelessness.
Action Duchenne is all about turning that around. The conference is about meeting sufferers, showing them new solutions and gathering pharma organisations to help them truly see the lives of these sufferers, empowering, families and giving them the information to move forward.
Illingworth were there particularly to introduce our concept of Research Nursing. We feel Research Nursing might be the key to making families in trials lives easier, and make the boys lives less stressful. We are confident this could result in more consistent trial results and happier patients we are hopeful this might be the future for Duchenne and other rare disease trials.
Most sufferers are boys. Tragically very few live into their thirties. The condition affects every element of their lives. Many also have OCD, digestive issues, and osteoporosis as result of steroid use to try and slow deterioration. They need to participate in potential life lengthening clinical trials, but they shouldn’t have to travel every week to site for basics such as blood draws and sub cutaneous injections. It disrupts their schooling, and is highly stressful and expensive to do. The standard parts of a trial can be done at the home or school if it is well regulated and the nurses are highly trained. This is why we are so passionate about the concept of Research Nursing.