Art Exhibit and Fund Raising Event for National Epidermolysis Bullosa Awareness Week
In November, 2008, Danielle O’Keefe approached a Frame Shop named Landmark Gallery and Framing in Wallingford, Connecticut that is owned by Gillian Zimmerman and asked if she could display some of her artwork and a small display in support of National Epidermolysis Bullosa Awareness Week. Happily, Gillian agreed to host the exhibit and display that they called, “2008 Art Exhibit and Fund Raising Event” of Danielle O’Keefe”.
Danielle O’Keefe suffers from a genetic disorder known as Epidermolysis Bullosa. Epidermolysis Bullosa (commonly referred to as EB by sufferers of the disorder) affects the skin and surface areas of the body, which includes the eyes, mouth, teeth and all internal surfaces too. As a result, tears, blisters, bleeding sores and pain are a common part of everyday life for those that suffer with it. Because it is very rare, Danielle has a deep interest in spreading awareness of this disorder and her “2008 Art Exhibit and Fund Raising Event” at Landmark Gallery was her way to get the word out.
In support of the event, Danielle also had a front page article written about her in a local newspaper. The article provides a touching summary of Danielle’s life struggles with EB, and how her family has rallied around her.
With the exposure from the exhibition and the printed article, Danielle was able to raise donations that she donated to an EB charity. Increasing awareness of EB is important for generating donations and the financial support needed to do research into a cure. Here is a letter, written in Danielle’s own words, that accompanied her artwork at Landmark Gallery.
Art Exhibit of Danielle O’Keefe
(Butterflies, with their delicate wings, have come to symbolize the fragility of the skin of EB patients.)
(During a hospitalization for a skin infection, Danielle created the painting named, “Landscape”.)
Newspaper Articles about Danielle’s Early Life
In addition to the successful exhibition to spread awareness of EB locally, below are two articles about Danielle, her daily struggle with EB, and its effect on her entire family. The first article about Danielle was published in 1998 and the second article was published in 2008. Both articles were written by journalist Jeffery Kurz for ‘The Record Journal’ located in Meriden, Connecticut. The files are large in size and may take a few moments to download. (Articles By: Jeffery Kurz, Photography: Chris Angileri)
Epidermolysis Bullosa Information
Overall, Danielle’s experience with 2008 National EB Awareness Week was a success. To further promote EB awareness, below are links to organizations that are helping families and the medical community in the search for a cure for Epidermolysis Bullosa (EB).