Epilepsy Awareness Month: Follow-up Interview with Susan Noble

The Warrior is back!

We talked with Susan Noble, founder of Epilepsy Warriors, in November 2012 and again in November 2013. Susan is a passionate advocate for children with epilepsy and their families and it is good to see her organization continue to grow and help those families.

Copyright: Susan Noble,
Epilepsy Warriors Foundation

Susan has also become a caregiver during these past few years which you can read about in her interview.

Robert’s Sister: I am curious what changes have occurred in the last four years. Please remind us how epilepsy has affected your life.

Epilepsy has affected my life in many ways both personally and professionally. 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. Losing a child changes you forever. You go on but you are never whole again. I also became involved because it has touched my family, friends and people.

Here we are four years later and, to me, epilepsy is still the least talked about illness in comparison to all the other illnesses out there. Epilepsy is as equally important and needs to have the same attention as any other healthcare issue and or diseases.

Robert’s Sister: Tell us about your advocacy work on behalf of those with epilepsy.

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

When I first started the Epilepsy Warriors my goal was to make a difference in the lives of those who suffer from epilepsy and seizures. I felt that by concentrating on the children I was doing just that. I thought I knew not only how much epilepsy affected the children with it but also their families, their siblings. Then I watched a documentary called “In the Land of Canaan” and WOW (!) it truly was an eye opener. Trust me, you need to see this documentary (and you will need a ton of Kleenex).

The focus of the Epilepsy Warriors Foundation is the family and I am so excited to announce that we, as a foundation, will be mentoring and supporting some amazing families over the course of this next year. Our goal is to help them by fundraising and getting them the help they so desperately need with the day to day management of living with epilepsy. For these families, the struggle truly is real.

Did you know that it can cost $1,600 per month alone for meds, doctors’ appointments and testing? Did you know a parent can spend $900 per month for a 30-day supply of medication and for some it’s even more and insurance does not always cover it either? Did you know that many families lose their homes, or can’t fix things in their homes because of the expenses incurred by a special needs child or family member, making it difficult to add things to the home like a bathroom that is special needs accessible for wheelchair-bound kids? Did you know?

Susan Noble

Robert’s Sister: What is the most significant change in your life since our last interview?

The most significant change is I started a business! Through the grace of God, He helped me create Blessed Events—The Gift of Giving.

Another change is that I am caring for my Mom who is going through Alzheimer’s and that has been the hardest change in my life. I live in two worlds: hers and mine.

It is one of the cruelest diseases as it robs the person of so much. It’s hard for us as children and for the spouses to watch the one you love lose so much and to realize they are not the same person anymore and they find it hard to do the simplest of tasks.

Robert’s Sister: What progress do you see in the treatment and research of epilepsy?

We have made progress in the treatments of epilepsy but not enough. We need to continue the progress we have made but we need so much more. One progress we have made is that of Medical Marijuana. It’s something I am still learning about researching but one of our board members is an amazing champion and advocate for medical marijuana in my Illinois home town. Medical marijuana is providing many people an alternative when before we would be at a loss.

It is, however, a slippery slope because while it is still federally illegal, people with access have seen tremendous relief from using it in some form. For individuals with epilepsy the benefit is most commonly seen in high CBD low THC strains. That’s not to say some people with epilepsy don’t need THC.

As a rescue medication THC is helpful. There is still a lot that needs to be learned about using medical marijuana to treat epilepsy and I do caution that, like many other treatment options, it may work for some and not for others.

Robert’s Sister: What has been your favorite moment these last four years? 

Watching Epilepsy Warriors continue to grow and doing some restructuring. Most of all, it’s the families and children I have met and just being there for parents that need help.

I’m not doing this to become a huge organization like CURE or the Epilepsy Foundation. For me, it’s about the families and the children. It’s about listening to what the families are going through, what they need and then advocating, acting on their behalf. When I first started I wanted to change the world and a wise doctor told me that Rome was not built in a day. Here I am four years later and I had what I refer to as my Oprah “Ah Ha” moment and realized what I needed to concentrate on and do was always right in front of me. “Focus on the Family.”

Robert’s Sister: What do you see for yourself in the next four years?

Continuing to grow and having the ability to reach many more families that are in need of our help and services. Continued growth and support in our communities. Really making a movement in the way epilepsy is talked about in public, the schools as well as working with our state legislators and representatives in getting things done for the betterment of our communities and families.

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

We are a Foundation with a substantial mission, indeed. With your help, however, we can work together to address the ever-growing needs for advocacy and educating as well as lift the societal burdens and physical limitations brought about by epilepsy. All funds raised for The Epilepsy Warriors Foundation through fundraising or direct donations benefit not only our foundation but our warrior ambassador families.

The families are chosen by us and will be supported over the course of a year to help alleviate some of the financial struggles they face in the daily living and management of epilepsy. The Epilepsy Warriors Foundation is a federally recognized 501(c)(3) non-profit organization. All donations are 100% tax-deductible, and we thank you for supporting our children and families.

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

You can reach out to us through our website www.epilepsywarriors.org, Facebook, Twitter and on Instagram.

Thank you, Susan, for taking time out of your busy schedule to tell us how you and your organization are continuing to help families living with epilepsy. As Susan said, epilepsy does not only affect the person with epilepsy but also the parents and siblings.

Also, thank you for your work as a caregiver for your mom. Alzheimer’s is a brutal disease and our heart goes out to you.  

We would love to tell your story this month during Epilepsy Awareness Month! Please contact me at robertssister@att.net if you would like to be a part of these interviews!

Trish

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 26^th, 2011 and a legal 501c3 Non-Profit on April 11^th, 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 18^th 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

info@epilepsywarriors.org

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!

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
Founder/President
The Epilepsy Warriors Foundation
P.O. Box 07286
Fort Myers, FL 33908
239-233-2205
susan@epilepsywarriors.org
info@epilepsywarriors.org
www.epilepsywarriors.org

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 robertssister@att.net.