Wednesday, November 27, 2013

Epilepsy Awareness Month: Advocating for Awareness and Answers - Interview with the Connecticut Epilepsy Advocate

Robert A. Fiore is the President and Founder of the Connecticut Epilepsy Advocate.  This nonprofit organization started with the encouragement of Robert’s wife and the passion of Robert who has lived with epilepsy his entire life.  They take their slogan “Progress through Awareness” seriously and can be found on Facebook, Twitter, You Tube and several television interviews in the Connecticut area. 

Aside from their persistence in spreading epilepsy awareness, one of their signature events is a bowling tournament!  Who doesn’t love bowling?  I mean, I’m terrible at it and the shoes leave a lot to be desired but it is always a good time.  If you asked my own Robert his favorite activity, he would most likely say bowling (as long as eating ice cream wasn’t an option). 

By the way, I am pretty sure today is Robert Fiore’s birthday so I want to wish him a very happy day!!

Let’s meet Robert Fiore:

Robert’s Sister:  Tell us the name, mission and goals of your organization.  

The Connecticut Epilepsy Advocate was formed as an alternative organization to make more people "Aware about Epilepsy."  We have set our goals to focus on the many facets of Epilepsy not currently explored to their fullest.

Our website has over 27 pages so please scroll and find the ones that are helpful to both you and those you know.

Our organization will interact with people to help them in any way we can about Epilepsy and if there is something we do not know (and trust me, we do not know it all) we will do our best to find someone for them to speak with who can give them the information they need.  Each of us here just wants more people to become "Aware About Epilepsy."

Robert’s Sister:  When was your organization founded and what was the catalyst for forming the organization?  

The Organization and our website were officially launched November 11, 2009 and it was totally revamped March 4, 2010.

Things regarding Epilepsy here in Connecticut were stuck on the same page; some even saw it as a conundrum.  However, after having a successful surgery for my Epilepsy my life kept looking for change, it was time for a change.  One day, after a conversation, my wife said, “Why don’t you start your own Organization?”  I said, “Are you serious?”  She said, “Yes.”

Robert’s Sister:  What do you see as the greatest need for epilepsy awareness or advocacy and how do you help fulfill that need? 

Each person should look at some type of Epilepsy, how to live with it and if it is possible to make living with it easier. If so, then help as many you can to do so.

Robert’s Sister:  What do you want people to know about epilepsy and the people you are working to help?

That can be answered this way:

FIRST: If you have Epilepsy accept it. 

SECOND:  Did you ever wonder about having a relationship with a person with Epilepsy? Don't wonder, just try. They can tell you: "Take a Chance on Me." We are just regular people with a Medical Condition.

THIRD: Please look at our FAQ Page

Robert Fiore - Photo Credit: Christian Abraham
Robert’s Sister:  What are some events your organization hosts in order to raise funds and awareness?

“Strike Out Epilepsy” is our only fundraiser.  The next one will take place on Sunday, March 2, 2014. Each year it continues to grow both with sponsorship and bowlers. We also have our annual walk. 

Everything can be found on our website on the Events page

Robert’s Sister: Tell us about your successes!

Robert Fiore is the President and Founder.  He has had Epilepsy since birth but it was discovered when he was nine months old.  In December 2005 he was scheduled to have temporal lobectomy surgery to correct his Epilepsy and he told the doctor, “When I recover I will do everything possible to push and promote Epilepsy.”  The look on the doctors face was friendly but he did not look convinced. Unfortunately, they had to reschedule.

The surgery took place Tuesday, January 17, 2006 and upon recovering Robert became an Advocate for Epilepsy.  Many people watched what he did and he came to a turning point in his life in the summer of 2009 and was told:  "Why don't you start your own organization."  Robert spoke with others and they agreed and supported that suggestion.

Our website was launched November 11, 2009 and is formatted to help people with information in many forms as well as making people "Aware About Epilepsy" in many ways. Both it and our organization have grown.  We truly hope you will follow us as we make ...Progress Through Awareness.

Robert’s Sister:   How has epilepsy and your organization affected your life?

It has brought a positive change being able to help so many people. I tell people that compared to others my Epilepsy is mundane.  Unlike so many others, it is under control.

Robert’s Sister:  Is there anything else you want us to know?

In November we begin our fifth year of existence and we have a Facebook page with over 3,270 friends.  We are also on Twitter, YouTube, LinkedIn and are Google listed as well.

Robert’s Sister:  Please tell us how we can contact and support your organization.     

Connecticut Epilepsy Advocate, Inc.
20 Salem Walk
Milford, CT 06460-7132

We do also have a Payments & Donations page.

My thanks go to Robert and his organization for what they do to raise awareness about epilepsy. They have thrown a “strike” with the work they do.  (I couldn’t help myself!)

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