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
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
Founder/President
The Epilepsy Warriors Foundation SWFL
P.O. Box 07286
Fort Myers, FL 33919
239-233-2205
www.epilepsywarriors.org
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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