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.
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| 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?
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?
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| Susan Noble |
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.
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.
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
