Sunday, November 4, 2012

What Epilepsy Means to Me: Susan Noble, Epilepsy Warriors Foundation

Merriam-Webster defines a warrior as “a man engaged or experienced in warfare; broadly: a person engaged in some struggle or conflict.” 

I love the strength the image of a warrior conveys.  Tough.  Persistent. Relentless in fighting the battle. With a very large, sharp spear (hey, it’s my image).

Warriors are courageous and fearless and Susan recognizes all of those qualities (except maybe the spear part) in all of her Epilepsy Warriors.

Susan Noble, Founder,
Epilepsy Warriors Foundation
Robert’s Sister:  Tell us what you do with regards to epilepsy.

I formed and founded the Epilepsy Warriors Foundation May 26, 2011 after researching and finding out that there just is not enough support within my local community and surrounding counties for those families that live with epilepsy on a daily basis.

Robert’s Sister:   How did you get involved in epilepsy advocacy?  Do you have epilepsy or know someone who has it?  

I got involved with epilepsy because I got tired of burying children or hearing of children that were taken from us and families broken due to SUDEP and because it has touched my family, friends and people I love and because it is the least talked about illness in comparison to all the other illnesses out there.  Epilepsy is just as important and needs to have just as much attention as any other healthcare issue and or disease.

It is time to bring epilepsy out of the shadows and to the forefront and make people aware of What it is, What you can do about it, How you can manage it, How to teach the proper Seizure First Aid and make everyone aware of the symptoms to look for and educate on being and getting seizure smart.

Robert’s Sister:  What is your mission with regards to epilepsy (treating it or advocating through the organization)?

Our Mission statement is: To empower. To thrive. To prevent, control and cure!

As President and Founder of the Epilepsy Warriors I am striving to reach as many people within the local communities to help educate and bring an end to the stigma of epilepsy.  It takes team work. It involves supporting each other in all efforts. It means showing the world that epilepsy is worth researching, fighting for, and funding. We are all fighting for a CURE for our children and those “Living with Epilepsy” every day.  We are a new foundation one with a passionate vision. This vision will light our path, and guide us towards our goals of “enlightening, empowering and curing.”

My goal is to help improve lives through leadership and education in the prevention, control and cure of epilepsy and seizure related diseases. 

Robert’s Sister:  There are so many stories – many sad stories – about those with epilepsy.  How do you continue to be passionate about your cause in spite of these stories?

When you hear of the death of a child or, as a parent, lose a child you get angry and you want answers when a child dies, it is one of the hardest things in life to understand. We have lost so many children to Epilepsy or Dravets and again we are looking into the tearful eyes of their parents, and we see one another. We know that without divine help, we could not bear that pain. We think about a precious life snatched away before it was fully formed, like a flower snipped from the stem just as it was beginning to bloom. We question “Why” but only God knows the real answer to that question.

Something overpowers you, the need to do something to help you understand the “WHY” to make you get up and do something to make a difference so that not one other family experiences brokenness and or pain like what so many families we know have.  I think the reason I am so passionate about this is because every time we lose a child or one of the children seizes it makes me angry and that is when I fight the hardest, it’s when I fight the hardest to get the word out or share my story, my blessings. This foundation, the children, the families they are my passion, they are my reason. The biggest reason for me is a little boy named John who taught me that honoring and remembering those we have lost is the best way to give back to the families.  I don’t do this for me, it’s for the families; it’s not about me it’s about the children.

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

Epilepsy has affected my life in a way that I never imagined or expected but the most important thing it has done for me or the biggest impact it has had on me is that it has opened my eyes to just what a struggle it is to live with this day after day, 24 hours a day 365 days a year and know that your life can change in an instant and for many of us it has changed us forever.  Why do I do what I do? Well because of : John, Danny, Scott Jr., Chelsea, CeCe (Cecelia), Adaleigh, Jordan, Piper, Joey, Donna, Eric, Kyle, Ryan, Savannah, Ezekial, Sam, Christopher Adam, Brayden, Joseph, Connor, Dallas, Bradley, Ken, Lydia, Giovanni, Marissa, Lizzy, Tina, Matthew, Clayton, Carolina, Samuel.  These are our Warrior Angels and my reason for fighting as hard as I do.

Robert’s Sister:  What do you see as the greatest need for epilepsy awareness or research? 

I feel the greatest need is public awareness, get more exposure, media involvement give epilepsy the same amount of air time as the other wonderful organizations out there.

Epilepsy gets little funding for research in comparison to Autism, Parkinson’s, MS, Alzheimer’s, though every day more people are diagnosed with epilepsy than any of these other illnesses mentioned. Research funding for epilepsy is about $35.00 per patient compared to $200-$400 for all other illnesses.

Sudden Unexplained Death in Epilepsy (SUDEP) accounts for 10% of all epilepsy related deaths; 85% of these fatalities occur between the ages of 20 to 50. SUDEP incidence is approximately 1 in 1000 people with epilepsy annually more than 10 times the sudden death rate found in the general population.

Robert’s Sister:  What do you want people to know about epilepsy?

It’s time to educate the general public that epilepsy is not contagious and it is not something to fear and that our kids and family members with epilepsy are just as normal as the next person. They may have epilepsy but epilepsy does not have them. Children and those with special needs are a gift and a blessing. Disability is not Inability.

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

Please join us in our cause and help us to fight and fund for a cure for our children and those living with epilepsy.  We are Warrior Strong!

Robert’s Sister:  Please tell us a bit more about your organization and how we can contact and support you.   

Parents, Caregivers of Children, Teens, Young Adults, Adults whom suffer from seizures, have been diagnosed with epilepsy, Dravet Syndrome, LGS so that we can spread awareness and TALK ABOUT EPILEPSY and bring an end to this horrible affliction that affects all of us.

We are a new Foundation with a substantial mission, indeed. With your help, however, we can work together to address the ever-growing needs for advocacy and research as well as lift the societal burdens and physical limitations brought about by epilepsy.

All money that is raised for and by The Epilepsy Warriors Foundation through fundraising or donations will be staying in the local communities as to where the Fundraising takes place. We are registered in the state of Florida, Chicago and Texas so any event we fundraise for in these states will stay in that community.

Giving back to the Community is important to me both here in Florida where I reside and also in Chicago where I was raised as well as in Texas where I have been able to connect with some of the best in the Medical District of Houston.

Funds raised by our Foundation will go towards an Epilepsy Monitoring Unit which is going to be put in the new Children’s Hospital being built at Health Park by Lee Memorial Health Systems in Fort Myers, FL.

Epilepsy Resource Centers: To build and or provide Epilepsy Resource Centers in the Florida, Chicago and Texas Markets.  Events, activities that offer both support and help raise or spread awareness is what we as a foundation believe is beneficial to not only parents, caregivers and families but also the community. It is through a resource center that we can and hope to achieve a level of support and services offered to bring families and the community together.

Susan Noble
The Epilepsy Warriors Foundation
P.O. Box 07286
Fort Myers, FL 33908

Robert’s Sister:  Thank you, Susan, for sharing your epilepsy story and for helping create so many warriors! (I’m off to go spear shopping . . .)

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at 

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