Monday, November 11, 2013

Epilepsy Awareness Month: Advocating for Awareness and Answers - Interview with The Epilepsy Warriors Foundation

Because I am on vacation (part of which is in Florida), I thought it fitting to share my interview with Susan Noble of The Epilepsy Warriors Foundation which is based in Florida.

Before getting to the interview, though, let me just say how grateful I am I haven’t seen any alligators in Florida. I don't actually know how common they are since I've never been here but my heart stopped for a second when our pilot announced we were flying over Alligator Alley. I figured we were safe as long as we weren’t in need of an emergency landing so didn't panic. Too much. 
Susan Noble, President and Founder of
Epilepsy Warriors Foundation

Vacation has been fantastic so far and it’s been exciting to be in a state I haven’t previously visited. Robert is in good hands and is being spoiled rotten by the staff at the wonderful facility where he is staying. I imagine we will both have plenty of wonderful stories to share once vacation is over!

In the meantime, Epilepsy Awareness Month is continuing and Susan is one of the people doing amazing work in spreading awareness and education this month and always. Last week, CURE told us about their organization and all they do to find a cure for epilepsy.    

It is such an honor to introduce people with such passion and drive to help others and I have many more interviews this month with some amazing organizations.  

Susan is one of those inspirational people. Please meet Susan:

As President and Founder of the Epilepsy Warriors Susan Noble is 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.”

Susan and her family spend time in both in Fort Myers, Florida and Chicago, Illinois.

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

The Epilepsy Warriors Foundation
Our Mission is To Empower, To Thrive, To Prevent, Control and Cure!

The Objectives and Goals for The Epilepsy Warriors Foundation are:
  • Opening of Epilepsy Resource Centers in Fort Myers, FL and Chicago, IL.;
  • Help and assist those in the local communities in need of finding a Service Dog, Supply Helmets to Children and families in need;
  • Raising awareness about Epilepsy and SUDEP on the local, national, and international levels and among lay professional and legislative societies alike;
  • Educating students and teachers about Epilepsy, with an emphasis not on FEAR of the disorder, but the proper care and management needed for living well in spite of Epilepsy;
  • Assisting in the education of community members, caregivers, and loved ones as to the appropriate steps needed to care for someone having a seizure;
  • Working with local hospitals, neurologists, practitioners and clinics to provide patient education and awareness about Epilepsy and SUDEP risks;
  • Providing a community-based forum in which patients, professionals and loved ones concerned with the disorder can become proactive and involved in advocacy and the search for a cure;
  • Working with representatives within the Med/Pharma Industry not only to ensure community access to Patient Assistance Programs, but also to influence the strategic direction of pipeline products and technology related to the disorder;
  • Providing resources outreach and much more to help parents and families within the Epilepsy community;

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

The Epilepsy Warriors Foundation became a registered foundation on May 26th, 2011 and a legal 501c3 Non-Profit on April 11th, 2012. The catalyst for my starting the foundation: knowing of parents losing children under the age of 4 between the fall of 2009 and spring of 2010 and the lack of resources, support for parents who lost a child to epilepsy, and seizures.

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

We must improve public awareness and knowledge; include media journalists as well as writers and producers in the entertainment industry; engaging people with epilepsy and their families from local communities in public service announcements - this all helps in spreading awareness.

I do that by speaking on television when the opportunity is given. Talking to people I meet in the store or at a local business. I hand out my business cards brochures. I send a lot of brochures and fact sheets out to other organizations that are attending or participating in conferences. Education is the key knowledge is Power.

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

That epilepsy is not contagious; it’s not something to fear. That, yes, it’s a struggle - that it can be overwhelming but if you surround yourself in support and become involved with those that are walking the same journey can relate to how you feel  you can and will get through it. We are here to help make this journey as easy as possible we know it can be challenging and we are committed to supporting you as best we can. We are proud to say “You are not alone!”

Robert’s Sister:  What are some events your organization hosts in order to raise funds and awareness?

We have hosted a dinner have done epilepsy awareness with our local baseball team the Miracle. We hosted a Purple Day event and on November 18th we are hosting our first luncheon. We also recently did an event on epilepsy and contact sports.

Robert’s Sister: Tell us about your successes!  

I have been so fortunate to have been able to connect with some of the best in the medical field and get the support of some amazing doctors behind me I think that is the most successful accomplishment I have been able to do since starting the foundation. I also have gotten support from many friends, as well as businesses and other organizations. Each time another organization reaches out to unite or want to collaborate that is a success because we can do far more together united as a team for the greater good than we can as individuals.

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

Epilepsy and the foundation have changed my life in ways I never even possibly could have imagined. It has changed me personally and spiritually for the better.  I never truly intended to start a foundation but for months after seeing the lack of resources for families that lost a child or needed support I kept experiencing strength far greater than my own leading me in the direction towards doing something to make a difference to honor the memories of our children. To let parents know they are not alone I believe this was God calling me to serve.  Best call I ever answered.

Robert’s Sister:  Please tell us what your involvement with your organization means to you.  Has this affected your own personal purpose? 

This organization means everything to me, there is nothing I would not do for these families and for the children. This is my passion - my purpose in life - and I want to leave a legacy for the children in my own personal family to be inspired, to serve, to help make the lives of those in need a little brighter and show compassion and unconditional love for those lives they touch. To grow up to find their passion in life and run with it knowing they can be and do anything they set their minds too.

I want them to have a purpose and use it for the greater good!

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

The Epilepsy Warriors Foundation feels it is important to reach out to as many people and companies as possible to help raise awareness for a devastating disease one that has claimed so many of our children and young people. We hope that you will join us in our efforts to improve the quality of life for those afflicted with and by this complicated disorder.  NO family should have to bury a child.

Just because someone has epilepsy it does NOT define who they are as individuals, that disability is not inability and that they are NOT disabled but are differently –ABLED. 

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

Susan J. Noble
The Epilepsy Warriors Foundation SWFL
P.O. Box 07286
Fort Myers, FL 33919

Robert’s Sister:

Many thanks to Susan who works tirelessly to help families who have lost a child to epilepsy. Her passion is inspiring and it is not an overstatement to say she is one dynamic woman who is changing the world.

Thank you, Susan!

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