I am doing 10km a day for 50 days on behalf of our son George and for the Addison Disease Charity to raise funds towards the research and development of an epipen style emergency injection for people living with adrenal insufficiency, like George, to use during a crisis.

The development of an epipen would give us more confidence when out with George and for when he starts school, knowing that someone would be able to quickly react in the event of a crisis rather than needing training and then making and adminstering a timely and daunting injection.

George has just turned two and has complex and life threatening disabilities. He has Septo Optic Dysplasia, Addisons Disease (secondary insufficiency) and Hypothyroidism. George deteriorated and failed to improve after birth so after various tests, xrays and an MRI he was diagnosed at 9 days old. The MRI showed he was missing his pituitary gland and the septum pellucidum and that his optic nerves are small and twisted, and along with his blood tests demonatrating his lack of hormone function we were given his diagnosis.

In the last year since my previous fundraising, George has progressed much more than we could have hoped for. He can now walk and say a couple of words. His delevopment is delayed and he still requires the same level of medicaton to function. Even with all what George has overcome and achieved so far, he still requires life saving emergency intervention if he is to become ill and have an adrenal crisis. Currently this would be by an intravenous muscle injection which can be extremely daunting to make up and give. The syringe is in two parts which have to be made up and then the medication which is in a glass vial is to be broken. All this is to be done while calling for an ambulance and while George's organs start to fail.

Research is being conducted to development an epipen style injection so it can be easily administrated when needed during a crisis, with little training in comparison to the current injection. Currently George can only be with a select few that have had training and guidance on how to save his life and the signs to look out for. The development of an epipen would make it simpler to inject someone during a crisis and also enable other people with adrenal insufficiency to be able to inject themselves when necessary, so not always relying on being with a trained responsible adult. After which they would need to be then urgently hospitalised for constant monitoring and medication until the crisis has stopped and the illness or the bodyily injury which caused the crisis has passed.

Money raised for research for the Addisons Disease charity is split between different research projects, all with the aim of improving and saving more people's lives living with the disease. Please see the link below for the epipen research and the other Addisons Disease funded projects.




Addison’s Disease is a rare endocrine condition where the body does not produce enough of the essential steroid hormone - cortisol. These hormones keep the body functioning properly and without these the organs will begin to shut down.

It is essential that people with Addison’s take their medication every day, at the exact right time of day – this is essential for life. They should also receive ongoing medical support, with regular appointments and blood tests with their endocrinologist to review their condition. As Addison’s disease is so rare, sometimes other medical professionals such as GPs or nurses are not very familiar with it or with the need for daily steroid medication, which can cause delay in getting vital urgent treatment.

Around 8% of people with Addison's Disease experience an adrenal crisis each year; some people more frequently than others. It's vitally important to learn the signs of an impending crisis and what to do in this medical emergency. A crisis can come about when the normal daily dose of hydrocortisone is not enough to cope with either a raise in temperature from an infection or virus, an injury, vomiting or diarrhoea, or extreme emotional stress. During these times the body will normally increase the cortisol amount enabling the body to cope and recover, but without this the body will go into an adrenal crisis. An adrenal crisis is a life-threatening situation and requires immediate medical treatment with an emergency injection of hydrocortisone and monitoring at a hospital until fully recovered. To survive it is essential to receive emergency treatment in time.

Addison’s disease affects approximately 1 in 10,000 people, meaning an estimated 300 - 350 new cases are diagnosed each year across the UK. This makes it roughly 300 times rarer than diabetes, another endocrine condition that sometimes occurs alongside Addison’s.

The charity works to provide practical support to people affected by Addison's Disease in a number of ways :

- advice & information for patients & their families
- emergency medical advice for patients
- information for healthcare professionals caring for people with Addison's
- lobbying the NHS, HSE, policy-makers and influencers to consider the needs of people with Addison's
- medical research Jonathan Sumner