2008 National Epidermolysis Bullosa Awareness Week, Fund-raising Event,
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Artwork Exhibit of Danielle O'Keefe
Danielle O'Keefe, daughter of John and Jennifer O'Keefe, suffers from a genetic disorder known as Epidermolysis Bullosa. Epidermolysis Bullosa (commonly referred to as EB by sufferers of the disease) affects the skin and surface areas of the body. The skin easily tears, blisters, and bleeds from very minor trauma. Damage can occur from ordinary activities such as clothing rubbing against the skin. Danielle is very interested in spreading awareness of her disorder, and in 2008 she decided to participate in the federally sponsored event known as National Epidermolysis Bullosa Awareness Week. Since she was a little child, Danielle has loved drawing, painting, and creating art. Danielle has even won a first place award for a picture that was entered in a local fair. She approached a Gallery in Wallingford Connecticut and asked if she could display some of her recent artwork and a brief presentation display in support of the event. The Gallery owner, Gillian Zimmerman was more than willing. Below are some photographs of Danielle, Gillian, and Danielle's artwork that was put on display.
Also in support of the event, Danielle had a front page article written about her in a local newspaper. (see below) The story (and an earlier one from 1998 - also below) provide a touching summary of Danielle's life struggles with EB and how her family has rallied around her.
As a result of the artwork display and the newspaper article, Danielle was able to raise money which she donated to an EB charity. Danielle is very interested in increasing awareness of EB with the goal of generating more financial support for research into a cure. Here is a letter, written in Danielle's own words, that accompanied her artwork at Landmark Gallery.
NEWSPAPER ARTICLES ABOUT DANIELLE O'KEEFE
Below are two articles about Danielle, her daily struggle with a rare genetic skin disorder called Epidermolysis Bullosa (EB), and its effect on her entire family. The first article (bottom) was written in 1998 when Danielle was very young and the second (top) was written in 2008. Both pieces were written by journalist Jeffery Kurz for 'The Record Journal' located in Meriden, CT. The files are large in size and may take a few moments to download.
Below are links to organizations that are helping families and the medical community in the search for a cure for Epidermolysis Bullosa (EB).