Joseph Ashford Establishes the Butterfly Foundation to Help Children Diagnosed with EB

December 11, 2021 0 Comments

Joseph Ashford, a Bournemouth resident and the founder of Butterfly Foundation for EB children, has been working tirelessly to help children with EB since he was diagnosed at a young age. After being told that there were no treatments available to help him as an adult, Joseph Ashford discovered his way to self-treat the symptoms of his disease through diet and exercise. He then created a foundation that would provide treatment information and support services for those living with EB.

EB is a rare genetic disorder that causes the skin to be extremely fragile and, in most cases, blister when it rubs up against something. The main symptom of EB is extreme pain caused by damage done to the skin due to daily contact with items in an ordinary person’s environment. This results in children being forced to live their lives indoors for fear of damaging their skin outside, but constant exposure to sunlight helps keep the disease under control.

There are four different types of EB, all with varying degrees of severity. One form of EB limits the individual’s facial features severely enough that they cannot speak or eat without assistance. A second type leaves its sufferers utterly defenseless against any possible infection as the skin cannot form a barrier.

Joe’s foundation has provided vital information and support to families living with EB since it began in 2009. The charity offers a helpline, grants for medical equipment and treatments not available on the NHS, and emotional support for both children and adults living with the disease. Joe himself regularly gives talks on EB around the UK to help educate people about the disorder and raise money for his foundation. Refer to this article to learn more.

In October of this year, Joseph Ashford, the Bournemouth business man, was awarded an MBE for his services to charity work. He said of the award: “I am honored to receive this award, and I would like to dedicate it to all of the incredible people who have supported the Butterfly Foundation over the last ten years.”

The charity is currently focusing on building a new sensory room at their headquarters in Poole, Dorset. The goal of this space will be to provide children with EB the opportunity to play and learn in a completely safe environment.