Five Questions for: Patricia “Pat” Dean

The chairwoman of the Board of Directors for Epilepsy Florida is a champion for children and families living with epilepsy.

Patricia Dean, the chairwoman of the Board of Directors for Epilepsy Florida, is a champion for children and families living with epilepsy.

Patricia “Pat” Dean serves as the Chairwoman of the Board of Directors for Epilepsy Florida and has, for over 35 years, been a champion for children and families living with epilepsy. Since 1984, she’s worked tirelessly to improve the lives of those struggling with epilepsy.  Presently she is the Epilepsy Program Specialist of the Comprehensive Epilepsy Program at Nicklaus Children’s Hospital.

During her day job, she provides hands-on patient care and parent counseling. When not assisting patients and families or serving as an advocate at the state and national levels, she has conducted research, spoke at national and international conferences to expand understanding as well as, educate nurses on epilepsy. She has been an active member of a number of professional organizations, including American Epilepsy Association and the American Association of Neuroscience Nurses.  She has received over a dozen awards for her service from a variety of agencies. She has authored numerous journal articles and book chapters on seizures and epilepsy and is a sought-after speaker on the topic. For her work with children and families, Pat has become a leader in the epilepsy community.

However, Pat’s greatest impact is on the lives of those she fights for. Stephanie Davis, whose daughter Olivia was treated by her, writes “Pat is more than your ordinary medical professional, she is the person thousands of children and their parents have leaned on in their most heart wrenching times.  She is the one who shows up hours before her shift to sit with parents as their child endures yet another brain surgery. She is the one who comforts sobbing mothers and fathers, encourages frightened siblings, and empowers young patients to stand up for themselves and take ownership of their disease.” Longtime colleague Ian Miller M.D., echoes the sentiment “The individuals cared for by Pat Dean are fortunate to have had a relentless nurse… they understand how special their relationship with her is: they send her announcements when they get married, write letters with photos when they have children”. Everything Pat does is to enrich and improve the lives of children and families battling epilepsy.

 

What is the mission for Epilepsy Florida?

For 50 years, Epilepsy Florida’s services are provided at no cost to families who live in 37 of Florida’s 67 counties. Its mission has been and remains clear — to provide resources, programs, support, and hope for the over half a million Floridians living with epilepsy, and their caregivers.

The scope of Epilepsy Florida efforts includes (1) to serve as a lead advocate for the rights and needs of people with epilepsy and seizure disorders at the local, county and state level; (2) the provision of a multitude of services to individuals and their families, regardless of their financial status.  A third important program is the Prevention and Education Program, serving Floridians with educational presentations in-person and virtually. Epilepsy Florida has education specialists throughout the state who educate schools, the community, EMT, police departments, medical students and many more about epilepsy and seizure first aid.  Epilepsy is feared and misunderstood, and Epilepsy Florida has become the most trusted source of education, helping professionals and caregivers support those in need.

 

Who are your clients at Epilepsy Florida?

 

As there is no cure for epilepsy, Epilepsy Florida provides expertise and access to Floridians from infancy through adulthood.  Some of our clients have been with us for over 40 years.  Many of those most impacted, and who we most traditionally serve, tend to be of a low socio-economic status.  Adults in this group typically lack insurance and their children are – at best – covered by limited Medicaid and/or Florida’s KidsCare Program.

The families we serve receive access to quality medical care and medications, along with mentoring and guidance, no matter what their socio-economic status.

In fact, having financial means and insurance is no guarantee that individuals afflicted know what to do, who to go to for care, and how to make informed choices.  As a result, Epilepsy Florida programs are designed to serve all those in need – including the fully insured – who often require assistance with advocacy, personal guidance with health choices and referrals to specialists.  Epilepsy Florida is often the first stop on a long and difficult road, as well as the last line of defense when seizures strike.

Our services ensure that people with seizures are able to participate in all life experiences, as our professional staff works to prevent and control epilepsy through services, education, and advocacy, as well as exploring and providing alternative treatments when available.

 

What do most of us not realize about Epilepsy Florida?

Established in 1971 as a not-for-profit 501(c)(3), Epilepsy Florida is the principal agency for epilepsy programs and services in the State of Florida. Formerly known as Epilepsy Foundation of Florida, EFL’s mission diverged with a focus on providing expert care to local communities.  As a result, in July 2018 Epilepsy Florida joined the national Epilepsy Alliance of America and formally adopted a new name – Epilepsy Florida.

 

What drives you to do what you do? 

The children and the families that struggle with epilepsy each and every day. Being able to comfort, and guide them through their very difficult and taxing journey. Seeing how happy the kids are at our camp, how much the parents appreciate a week of reprieve that someone will take care of their child. How much we at Epilepsy Florida help those with epilepsy.

And what is the next chapter for Epilepsy Florida?

To continue to provide services to ALL persons in Florida touched by epilepsy.   Whether it be someone who is newly diagnosed, in need of information and support; a school-aged child in need of educational advocacy; help with transitioning from pediatric to adult health care & guardianship advice; assistance in obtaining information on the most current treatment protocols or to secure detection devices. Epilepsy Florida stands at the ready to be a trusted resource and tireless advocate.