EFWCP Board Member becomes Chair of National Epilepsy Foundation Board of Directors

The EFWCP would like to congratulate our very own Joyce Bender on the tremendous honor of being named Chair of the Board of Directors for the National Epilepsy Foundation. Joyce began serving on the EFWCP's local Board of Directors in 1999 and has become an incredible inspiration to people living in our area, across the country and even internationally. Joyce's personal story of turning tragedy into triumph is impossible not to admire.

Joyce's journey with epilepsy began in 1985 while she and her husband were enjoying a night out at a local movie theatre. While waiting in line at the refreshment counter, Joyce experienced a tonic seizure. Joyce's seizure resulted in a life threatening fall, intra-cranial brain hemorrhage and subsequent brain surgery. Joyce ended up with a 60% hearing loss in one ear from the fall and a diagnosis of epilepsy. Against all odds, Joyce was able to recover from this tragic incident and quickly developed a passion for helping people with disabilities. Prior to this incident, Joyce had "fainting spells" for several years that were not properly diagnosed as epilepsy.

In 1995, Joyce founded Bender Consulting Services - a firm that provides recruitment services to its customers and competitive employment opportunities for people with significant disabilities. Joyce has become an absolute champion for people with disabilities, and is supportive of civil rights legislation including the passage of the Americans with Disabilities Amendments Act of 2008, which secures protections against discrimination for every American with a disability, including people with epilepsy.

Among her many talents and jobs, Joyce hosts a weekly radio program called "Disability Matters" which is one of the first international talk radio shows with real-time captioning focused on the employment and empowerment of people with disabilities. Disability Matters is on the VoiceAmerica Channel (www.voice.voiceamerica.com) every Tuesday from 2:00 pm - 3:00 pm Eastern Time. The toll free caller/listener number is 1-866-472-5788.

In addition to her work with the EFWCP, Joyce sits on the boards of ten other organizations and has received numerous awards through the years for her work with employment issues. Some of Joyce's most notable honors include a 1999 President's Award, presented to Joyce at the White House by President Bill Clinton. The President's Award is the highest honor awarded by the President of the United States to an American who furthers the employment and empowerment of people with disabilities. In 2003, Joyce was honored by the White House again when she was selected by President George W. Bush as a Bush Administration New Freedom Initiative Award winner.

Joyce Bender has also been recognized as a Pittsburgh Post Gazette Community Champion and was a 2008 Pittsburgh Business Times Diamond Award recipient. Joyce's accolades are numerous, but becoming Chair of the Board of Directors of the National Epilepsy Foundation might just top them all. Joyce will serve a two-year term as Chair, during which she has many aspirations. We were recently able to sit down with Joyce and discuss her main goals, and how she hopes to achieve them.

First and foremost on Joyce's platform is employment. Joyce's life crusade has been about employment, and her current leadership position will allow her to explore this issue further. When asked where we need to go with the employment issue Joyce said, "We need to get to a place in time where people with epilepsy are completely included in employment. They have not been in the past and they are still not today."

Along with increasing employment, Joyce will tackle one of the hardest aspects of having epilepsy - erasing the stigma. There is still a great deal of stigma, and it is the main catalyst in discrimination against people with epilepsy. According to Joyce, the first step in ending stigma is education. "More education is needed, not just in schools, but in police departments and communities. People need to be educated on the spectrum of epilepsy. On one hand there are people who are lucky and their seizures are controlled on medication, but on the far other hand are people who have hundreds of seizures a day. The key to ending stigma is to look at the entire spectrum and educate everyone!"

Another very meaningful aspect of Joyce's platform is the National Youth Council. Joyce believes that young adults are a vital part of every epilepsy affiliate because the youth are our future leaders. During her tenure, Joyce will push for every single affiliate to have a youth council and have a young person on their Board of Directors. (To learn more about the EFWCP's Youth Council, click here: http://www.efwp.org/programs/programs_14.shtml ).

Finally, Joyce will focus on diversity. African American, Latino, and other diverse communities cannot be left out of the dialogue and education. Diversity outreach is an important key to ending the stigma of epilepsy in every community.

Joyce said that to be named Chair of the Board of Directors is absolutely the highest honor, and she does not take this honor lightly. She wants every Epilepsy Foundation affiliate to know that she stands behind them and supports their efforts all the way. Joyce also wants to thank all of the people with epilepsy and their families for raising their voices when they are needed the most, especially when it comes to calling your legislators and restoring epilepsy funding. She urges those affected by epilepsy to remember the importance of using your voice and standing up for epilepsy rights, and encourages everyone to continue talking about epilepsy.

After all of the adversity Joyce has faced in her life, she wants everyone to know that to her, being named Chair means "that dreams do come true". Joyce says that even though she is now head at the national level, her heart still belongs here in "The City of Champions" where she is so proud to serve on the local EFWCP Board of Directors.