Epilepsy Awareness Month: Advocating for Awareness and Answers - Interview with The Epilepsy Network (TEN)

November has just flown by! Today is the last day of Epilepsy Awareness Month and the interview today is with Tiffany Kairos of The Epilepsy Network (TEN).  One of Tiffany’s goals is to get the NFL to support Epilepsy Awareness.  Having grown up in Omaha, I am a huge football fan (Go Huskers!) but I recognize football carries with it the risk of a concussion – or several.   With the coach of a major college football program not keeping his battle with epilepsy and uncontrolled seizures a secret (thank you, Coach Jerry Kill of the University of Minnesota Gophers), awareness of epilepsy in the football community is growing.

(The only problem I have with Coach Kill is his team beat my beloved Huskers this year! Ouch!)

Let’s hope between Coach Kill and the work Tiffany is doing, the NFL (and the NCAA while we’re at it) will officially support Epilepsy Awareness Month one November.

In the meantime, please welcome Tiffany!

Tiffany Kairos, Founder
The Epilepsy Network

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

The name of my organization is The Epilepsy Network (TEN). The mission of The Epilepsy Network (TEN) is to reach out all across the world to educate, advocate and break down the stigmas surrounding Epilepsy. In addition, our mission and goal is to UNITE those with epilepsy worldwide, uplift one another and stand strong to find a cure!

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

The Epilepsy Network (TEN) was founded in 2010. The Catalyst for creating The Epilepsy Network (TEN) came from my own journey as an Epilepsy diagnosee. In the beginning of my journey, I felt alone, confused, frightened and uneducated about my condition. I didn’t know of anyone else with my condition and I felt that I would encounter stigmatism. All of this became my mission to learn everything there is to know about Epilepsy, meet others with the condition and provide a network where people could discover more about the condition and that they were NOT alone. That they have support and they do not need to feel ashamed in any way about having Epilepsy. 

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

I see that the greatest need for Epilepsy Awareness and Advocacy is: Understanding, Compassion, Education, and Opportunities to Be Heard.

What The Epilepsy Network (TEN) provides to fullfill that need is ALL of this and much more. We provide educational imagery and material, Factual and Myth Breaking Imagery and material, Inspirational and News Related Articles from around the world, Opportunities to speak out and let your voice be heard, Opportunities through unique missions to attempt to involve companies to show support (NFL Support Epilepsy Awareness & Turn Google Purple For Epilepsy) and we continue to grow providing more ways to learn more and do more to create change on behalf of Epilepsy Awareness. 

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

What I want people to know about Epilepsy is that there are a staggering 65 million men women and children all around the world diagnosed with Epilepsy. Epilepsy can happen to anyone anywhere and at any time. It’s something that must be given spotlight. Must be given recognition. Must be freed from its stigma that still exists to this day. 

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

The events that The Epilepsy Network (TEN) actively hosts in order to raise awareness are NFL Support Epilepsy Awareness, Turn Google Purple For Epilepsy and our Shine Your Light For Epilepsy Awareness event which is currently in its 2nd year, happening every November all month long.

It is our hope that we may convince the NFL to support Epilepsy Awareness on the field in November just as they do for Breast Cancer Awareness in October. Especially with the rise in Concussions within the sport. It is also our hope with Google, that they will support Epilepsy Awareness by featuring a Google Doodle on their home page any specific day in November in honor of Epilepsy Awareness. With Google’s estimated 300 million interactive users per day, it would pose as a wonderful educational opportunity for Epilepsy Awareness. Our Shine Your Light For Epilepsy Awareness event rallies families and businesses around the world to show their support for Epilepsy by shining one or more Purple lights causing individuals to inquire about the light therefore providing an opportunity to educate about Epilepsy!

Robert’s Sister: Tell us about your successes!

The Epilepsy Network (TEN) has successfully reached out to thousands of supporters from around the world whether they be diagnosed, friends and/or family of. We have successfully achieved support and shout-outs from various celebrities and athletes which are located within our Facebook page photo albums, I and the network have been featured previously in the Epilepsy Advocate magazine for my personal blog (TiffanyKairos.com), I have acquired multiple proclamations from cities in Ohio and the state of North Carolina and we hope to continue to achieve many successes as we grow. 

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

Epilepsy has affected my life personally in the most positive of ways. As foreign as this may sound, I am thankful for my Epilepsy and feel that it is my blessing in disguise. My diagnosis and my organization The Epilepsy Network (TEN) have humbled me and has ignited my heart and soul in a multitude of ways. I have learned to embrace life as I had never done before. It has made me a much stronger and more vocal individual, I am achieving goals I never knew I were capable of. I am doing what I always wanted to do which is give of myself and help others. It has opened my eyes to what I feel is my purpose in life. It is something that continues to grow me, teach me and strengthen me. It is something I plan to do for the duration of my life. 

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

My involvement with The Epilepsy Network (TEN) as the founder means the world to me. It gives me the opportunity to journey Epilepsy on a personal level but also advocate for Epilepsy in a way that I see best for the world. As the founder, I choose not to copy or mimic what anyone else is doing but to advocate in my own unique and special way. A way that I hope others will embrace and love.

Robert’s Sister:  Please tell us more about the person answering the questions here. 

Tiffany Kairos, 27, is a daughter, sister, and wife diagnosed with Epilepsy. Tiffany is also an Advocate for Epilepsy (The Epilepsy Network). She enjoys life to its fullest. A devout Christian, lover of music, and art. She also enjoys blogging, detailing her journey with Epilepsy (TiffanyKairos.com) and giving selflessly to helping anyone in need whether it be within her community or around the world. 

Thanks to Tiffany for sharing her story and her passion with Robert’s Sister!  I hope one day to see more purple on the football field during Epilepsy Awareness Month and to see Google recognize Epilepsy Awareness Month as well. 

Tiffany can be reached through her blog, Facebook, Twitter (at either @TENofficial or @TiffanyKairos), as well as LinkedIn. 

Let’s spread the purple! (And, no, I don’t want to talk about the Huskers' loss yesterday.)

Epilepsy Awareness Month: Advocating for Awareness and Answers - Interview with the Connecticut Epilepsy Advocate

Robert A. Fiore is the President and Founder of the Connecticut Epilepsy Advocate.  This nonprofit organization started with the encouragement of Robert’s wife and the passion of Robert who has lived with epilepsy his entire life.  They take their slogan “Progress through Awareness” seriously and can be found on Facebook, Twitter, You Tube and several television interviews in the Connecticut area. 

Aside from their persistence in spreading epilepsy awareness, one of their signature events is a bowling tournament!  Who doesn’t love bowling?  I mean, I’m terrible at it and the shoes leave a lot to be desired but it is always a good time.  If you asked my own Robert his favorite activity, he would most likely say bowling (as long as eating ice cream wasn’t an option). 

By the way, I am pretty sure today is Robert Fiore’s birthday so I want to wish him a very happy day!!

Let’s meet Robert Fiore:

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

The Connecticut Epilepsy Advocate was formed as an alternative organization to make more people "Aware about Epilepsy."  We have set our goals to focus on the many facets of Epilepsy not currently explored to their fullest.

Our website has over 27 pages so please scroll and find the ones that are helpful to both you and those you know.

Our organization will interact with people to help them in any way we can about Epilepsy and if there is something we do not know (and trust me, we do not know it all) we will do our best to find someone for them to speak with who can give them the information they need.  Each of us here just wants more people to become "Aware About Epilepsy."

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

The Organization and our website were officially launched November 11, 2009 and it was totally revamped March 4, 2010.

Things regarding Epilepsy here in Connecticut were stuck on the same page; some even saw it as a conundrum.  However, after having a successful surgery for my Epilepsy my life kept looking for change, it was time for a change.  One day, after a conversation, my wife said, “Why don’t you start your own Organization?”  I said, “Are you serious?”  She said, “Yes.”

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

Each person should look at some type of Epilepsy, how to live with it and if it is possible to make living with it easier. If so, then help as many you can to do so.

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

That can be answered this way:

FIRST: If you have Epilepsy accept it. 

SECOND:  Did you ever wonder about having a relationship with a person with Epilepsy? Don't wonder, just try. They can tell you: "Take a Chance on Me." We are just regular people with a Medical Condition.

THIRD: Please look at our FAQ Page. 

Robert Fiore - Photo Credit: Christian Abraham

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

“Strike Out Epilepsy” is our only fundraiser.  The next one will take place on Sunday, March 2, 2014. Each year it continues to grow both with sponsorship and bowlers. We also have our annual walk. 

Everything can be found on our website on the Events page. 

Robert’s Sister: Tell us about your successes!

Robert Fiore is the President and Founder.  He has had Epilepsy since birth but it was discovered when he was nine months old.  In December 2005 he was scheduled to have temporal lobectomy surgery to correct his Epilepsy and he told the doctor, “When I recover I will do everything possible to push and promote Epilepsy.”  The look on the doctors face was friendly but he did not look convinced. Unfortunately, they had to reschedule.

The surgery took place Tuesday, January 17, 2006 and upon recovering Robert became an Advocate for Epilepsy.  Many people watched what he did and he came to a turning point in his life in the summer of 2009 and was told:  "Why don't you start your own organization."  Robert spoke with others and they agreed and supported that suggestion.

Our website was launched November 11, 2009 and is formatted to help people with information in many forms as well as making people "Aware About Epilepsy" in many ways. Both it and our organization have grown.  We truly hope you will follow us as we make ...Progress Through Awareness.

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

It has brought a positive change being able to help so many people. I tell people that compared to others my Epilepsy is mundane.  Unlike so many others, it is under control.

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

In November we begin our fifth year of existence and we have a Facebook page with over 3,270 friends.  We are also on Twitter, YouTube, LinkedIn and are Google listed as well.

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

Connecticut Epilepsy Advocate, Inc.

20 Salem Walk

Milford, CT 06460-7132

Email: ctepilepsy@optonline.net

Website: www.ct-ea.org

We do also have a Payments & Donations page.

My thanks go to Robert and his organization for what they do to raise awareness about epilepsy. They have thrown a “strike” with the work they do.  (I couldn’t help myself!)

Epilepsy Awareness Month: Advocating for Awareness and Answers – Interview with Connor of Dare to Dream

Epilepsy Awareness Month: Advocating for Awareness and Answers – Interview with Dare to Dream

Last year during Epilepsy Awareness Month, I interviewed Connor Doran.  Of course, Connor didn’t need any introduction because he KNOWS HOWIE MANDEL!!

Connor during a Kite Flying Performance

Well, that’s not exactly why (but it helps).  Connor first caught America’s (and the world’s) attention during Season 5 of America’s Got Talent with his beautiful kite flying performance. I remember watching the show and seeing Connor for the first time.  His mom was with him as well and they both talked about his having epilepsy and how he became involved with kite flying.

Listening to them and watching his first performance brought tears to my eyes.  The performance was absolutely stunning and they brought awareness of epilepsy in that quick interview to millions of people.

Connor and his mom, Amy, continue to spread epilepsy awareness and education through their Dare to Dream team. I am thrilled to be able to have them participate in the interviews again this year.

The only thing that would make me happier is if they could introduce me to Howie Mandel (I just want to tell him how much my daughter and I enjoyed his Bobby’s World series!).  I know that sounds nutty but, of course, that’s no surprise to faithful readers.

Let’s talk with Connor and Amy:

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

My name is Connor Doran and I run the Dare to Dream team. The Dare to Dream team goes around to different schools all around the country. We educate people about Epilepsy and raise awareness about bullying and what kids should do if they get bullied. We also show kids how to fly indoor kites. We do several demonstrations of indoor kite flying to music. After the demonstration flying we teach all the kids, teachers and facility staff about flying indoor kites.  

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

When I was 4 years old I was diagnosed with Epilepsy. All of my life I have been bullied or made fun of because of my Epilepsy Induced Anxiety and OCD. Kids and teachers would imitate seizures and stereotype and other people with Epilepsy. Because of the Anxiety and OCD that I had, kids would laugh at me and take advantage of my emotions just to make me upset. They would also cough on me and my food because they knew I had a fear of germs as well. After being on America’s Got Talent I realized that anyone could achieve anything as long as they set their mind to it. I also realized that I was not the only one who was getting bullied at school. That is why I set up this program to let kids know that they are not the only ones who get bullied and that there are people that kids can go to. I go into kite flying when I was 14 years old and it took away my Anxiety and it gave me strength to get through my experiences with bullying.  I figured if that if kite flying helped me then I should share so I could possibly help other people.  

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

From a person living with Epilepsy I think that raising awareness about Epilepsy is the greatest need. I have been in and out of hospitals my whole life and the only thing that the doctors could say to me was try this drug and let’s see if it works. I feel that if we raise awareness about Epilepsy we will get the public more educated about Epilepsy, we will teach people about what Epilepsy is and as a result the stereotypes about Epilepsy will go down and doctors will do more research to find more effective treatments and a cure for Epilepsy.  

Connor in Washington, D.C.

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

I want people to know that there a millions of people who live with Epilepsy every day and that most of us are smart, well-educated people. We do not like the rest of the public stereotyping people who have Epilepsy as being stupid. 

All people need to know seizure first aid and how to recognize a seizure.  That can be difficult as seizures can appear in different ways.  Even repetitive behavior such as opening and closing a gate over and over can mean a person is having a seizure.  People need to be aware that someone may not be “drunk” or under the influence of drugs, but may simply be having a seizure.

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

We have done fundraising for local Epilepsy foundations when we perform at Kite Festivals around North America. We always try to connect and work with the foundations where we are performing. Inviting them to a festival to share information and awareness allows them to reach more people. 

Robert’s Sister: Tell us about your successes!

In 2010 I told my mom that I wanted to audition for America’s Got Talent. She did not believe me. After pressuring her for about a month she sent in a video of my flying.  About a month later we heard back from the producers of America’s Got Talent saying that they were impressed and asked us to come to the open auditions in Portland, Oregon. After flying in front of the producers in Portland I got a call a week later from the show asking me to come back to Portland and audition in front of the judges. When I stepped out on that stage I was nervous but I told Howie Mandel, Sharon Osborne and Piers Morgan why I fly kites because it takes away my fears about Epilepsy and my experiences with bullying. I also explained how indoor kite flying helps.  I advanced through four rounds and went to the live Semi-Final round in Los Angeles where I placed 12^th out of 90,000 people.  Since then I have received letters from people all over the world about their experiences with Epilepsy. I have become an Epilepsy Advocate for the American Epilepsy Foundation and have traveled across North America performing and talking about Epilepsy and bullying. In 2011, I spoke at the National Walk for Epilepsy at the National Mall in Washington D.C. in front of 7,000 people.

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

Epilepsy has affected all aspects of my life.  It has affected my life in different ways as I get older. When I was little I didn’t really remember having seizures, but I did remember a lot of medications, and doctors and hospital visits.

When I was 14 and my seizures started again, my social life as a teenager and my wanting to be an independent teenager sort of clashed. It made it difficult for me because when other teens were learning to drive, I had to make the decision not to drive because it would have been dangerous to others as well to me.  To this day, I still do not drive for that same reason.

It also was depressing to me to watch others learning to drive and going through the normal teenage milestones.  As a young adult, it is a lot harder for me to be more independent then others, but I am currently taking steps to become more independent and live with Epilepsy at the same time.

I currently am wearing a Smart Watch Monitor that detects seizures and sends an alert by text message to my friends and family giving them my location by GPS. It also automatically dials my phone to one person on my Smart Monitor list which allows someone to be able to talk to me or for me if I cannot.  It has made a huge difference in my independence as I can travel and be out on my own.  I would like to thank The Chelsea Hutchison Foundation for sponsoring me to get the Smart Monitor.  I was not even aware that there was such a thing available and because of them it has changed my life. I would also like to thank the Smart Monitor Company for their help and sponsorship.

For more information on The Chelsea Hutchison Foundation: http://www.chelseahutchisonfoundation.org/

For information on The Smart Monitor: http://www.smart-monitor.com/smartwatch/success-stories/

 

Connor Kite Flying

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

The Dare to Dream Team has worked with many different groups of people around North America.  It is not limited to people that have Epilepsy.  It is about believing in your potential, and your dreams and how to reach them.  Bullying is often done by people that do not believe in their potential. By teaching and talking to people, we not only help the persons that are being bullied, but we also reach the person that may be feeling like they need to bully in order to feel power over another.  Thus, the program has the ability to help all that are involved. The kites themselves work as a way of having the “impossible” become possible right before their eyes. How many people think a kite can fly indoors? It seems impossible and yet, as they hear our story, and see it is indeed possible, it helps people realize they should not give up on things that seem out of reach.     

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

You can always go to our website at http://connordoran.com/ and find out what we are doing and our current schedule.  We love to hear from people as well, and you can email us directly at connordorankite@gmail.com  

Robert’s Sister:  Please tell us more about the person (or persons) answering the questions here. 

Connor Doran flew his way to NBC’s America’s Got Talent Top 12 spot on season 5, making him one of the world’s best known kite fliers. Connor auditioned along with 90,000 people and brought indoor kite flying to the world. His skill and love of flying qualified him to the Las Vegas rounds, and he was brought back by Howie Mandel for the Live Wildcard Quarter Finals show, in Los Angeles California.  Connor’s world wide support gave him a spot in the top 24 for the Semi Final round. He then remained in Los Angeles and landed in the top 12 of The America’s Got Talent! 

Now attending South Puget Sound Community College in Olympia Washington, Connor shares his love of kiting with new fliers as well as learning from the masters who have supported him and helped him in his journey. He has developed the Dare to Dream Program that has been shared in venues all over North America inspiring others to believe in themselves, to follow their dreams, and to speak out against bullying.  The Dare to Dream Program has moved people of all ages to become empowered and inspired. Connor also works hard to raise Epilepsy Awareness, and to advocate for epilepsy education. His appearances have including speaking in Washington D.C., full production performances, and performing the Dare to Dream program across North America. For more information on upcoming performance dates and location visit

http://connordoran.com/ or email Connordorankite@gmail.com.

Amy Doran (Connor’s Mom)

With 5 AKA Grand National titles under her wing, Amy’s goal is to share kiting and the joy it brings with people around the world. 

Amy has performed in a wide range of venues which include full production shows to the opening ceremonies of the Macabbi Olympic Games.

Amy has been privileged to work with Revolution Kites to create masterpiece series revolutions kites.  All the work she does is her own custom artwork. Her latest Masterpiece Revolution *SkEyes* was one of the kites featured in Revolution Kites Masterpiece Challenge.

In 2007 she qualified for the American Kite Association National Championships in Ocean Shores, Washington. That is where the *Charlie Chaplin * routine really emerged in the Outdoor Open Individual Ballet.  *Charlie* has now won two national championships.  *Charlie* continues to have fun with crowds all over North America.

Along with her son Connor Doran who made the top 12 on America’s Got Talent Season 5, Amy helped develop the Dare to Dream Team to help raise Epilepsy Awareness and money to support research and support for the National Epilepsy Foundation.

Amy and Connor Doran have spoken to many people about the Dare to Dream concept to motivate others to believe in themselves and strive to be everything they can be.   Amy and Connor speak out against bullying and help others gain a voice to speak out for themselves and others.  The Dare to Dream Program is being presented in venues and schools throughout North America by Amy and Connor Doran and the Dare to Dream Team.

Thanks very much to Connor and Amy for their time and for what they are doing for epilepsy awareness and education.  They have shown the world it is indeed possible to have your dreams come true!

Now, about that introduction to Howie Mandel . . .

Epilepsy Awareness Month: Advocating for Awareness and Answers – Interview with Angels of Epilepsy Foundation

I was feeling guilty for getting behind in posting the interviews with advocacy organizations during Epilepsy Awareness Month but it dawned on me that highlighting these outstanding organizations is not only important during the “official” awareness month but also beyond.

(Although now that I’m done preparing for vacation and actually taking vacation, I will post as many interviews as possible!)

The importance of spreading awareness and education about epilepsy doesn’t stop just because the calendar turns to December.  I am fortunate to have connected with such worthy organizations and feel honored to be able to bring you the interviews with the people who are the passion and drive behind the organizations.

My Twitter addiction is no secret and I am thrilled it isn’t as that is how I connected with Natalie Y. Beavers of the Angels of Epilepsy Foundation. (You can follow Natalie on Twitter at @AOEpilepsy)

Natalie tells us a little bit about herself:

Natalie Y. Beavers is an epilepsy survivor, an advocate, and founder of the “Angels of Epilepsy Foundation” in Atlanta, GA.  She is a proud mother of her two sons and work hard interacting with many epilepsy patients, as well as spreading the awareness to get more people educated and involved in supporting epilepsy awareness.

Being hospitalized for months dealing with testing, Natalie had two craniotomies (brain surgery) in 2008.  Even though she has had the brain surgeries, it did help decrease her episodes but due to the cyst that’s still on her brain, she has seizures from time to time.

Natalie is now writing a book about her life.  From her childhood experiences, becoming a single-parent, battling with epilepsy and her life as it is today.  There will be many shocked about this story because Natalie is telling real-life experiences that many never even knew or couldn’t even imagine.  

Natalie plans to visit more states to tell her life experiences living with epilepsy and continue to advocate for the millions battling this medical condition. She and many others hope that one day there will be a cure for epilepsy.  Her “Angels of Epilepsy Foundation” continues to work hard each day to support and advocate for the many living with epilepsy. Something that Natalie says many times to herself and many others for motivation is, “For we walk by faith, not by sight.”  

** To read more about Natalie’s story and information about her foundation, visit www.aoepilepsy.org.  Natalie implores us to SUPPORT EPILEPSY AWARENESS!

Natalie Beavers, Founder of Angels of Epilepsy

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

Angels of Epilepsy is a non-profit support foundation and advocacy that deals with many epilepsy survivors and their families in Georgia and around the world.  AOE assists and provides educational information, visits to patients, and much support in many of their needs.  Our main goal is to continue to spread epilepsy awareness and get more people involved and educated about it.  But AOE achieves our other goals just being there for epilepsy survivors and showing our love and support for them and their families.

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

Angels of Epilepsy was founded in 2008 when I was going through testing at Emory University Epilepsy Hospital in Atlanta.  Spending many weeks there, I met many epilepsy survivors and their families.  And I was so shocked just to know that there were so many other people out there who are just like me.  We talked and cried together, and discussed how epilepsy really is in our lives.  So I wrote a lot while being there and I thought about starting an organization that can and will help those living with epilepsy.  AOE was organized right before my first brain surgery in 2008. 

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

I feel the greatest need for epilepsy awareness should be for many others to be educated and know about this medical condition.  It will help the many of those battling with epilepsy for others just to show much support.  The letters and e-mails that we receive from survivors or their families, encourages me and my organization to get more involved in their lives and to help their stories to be heard.  I will also be coming out with a book about my life story, and how I faced so much living with epilepsy.  Also, in November, I will release a journal book for epilepsy survivors that will help them in so many ways.  Living with epilepsy myself, I deal with short-term memory loss and I have to write a lot.  So I’ve created a book, called “My Seizure Diary.”  In the book, there are pages that survivors can write down the date of their episode, type of seizure that happened, descriptions, and questions or concerns they can write to ask their doctors.  In this book there is also a journal where they can just write some of their thoughts.  This book will also be great for parents dealing with children so they can write down their children’s episodes and questions for doctors. 

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

I would like for many people to know that epilepsy affects millions of people around the world.  It is not a disease, it’s a medical condition that deals with the brain.  There are many people living with epilepsy that need attention.  There are so many stories from those living with epilepsy and we just want them to be heard.  AOE is dedicated to support and just to be there for the many battling this medical condition, and helping them live a normal life.

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

Angels of Epilepsy has events throughout the year.  We have monthly meetings with epilepsy survivors and their families. We have our "Purple Pastry Party" a few times throughout the year.  And in November, which is Epilepsy Awareness Month, we have our annual awareness celebration.  At these events, we provide educational information about this medical condition and resources that could help in many ways.  All donations and proceeds are for special gift-baskets for epilepsy patients at Emory University Epilepsy Hospital and Egleston Children's Hospital here in Atlanta, and for many survivors in other states.   We also provide needs for their families as well. 

Robert’s Sister: Tell us about your successes!

Angels of Epilepsy has been successful in many ways.  We’ve put so many smiles on patients battling with epilepsy, as well as their families.  We provide information and a lot communication with them.  Just sending letters and gifts to them and to see the reactions, makes my foundation work even harder to advocate and support even more for epilepsy survivors.  AOE is also hoping that the book we’ve created, “My Epilepsy Diary,” will help and encourage the many living with epilepsy. 

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

I’ve battled epilepsy for many years and it has affected my life in many ways.  But I’ve learned to turn the negative into positive!  We all go through things for a reason so I am just living day by day and following my journey to help and inspire those who are just like me living with epilepsy.  Meeting and communicating with those battling this medical condition, just gives me motivation to advocate and support epileptics, and definitely spread awareness. 

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

The involvement with my organization means so much to me!  Just to be there for the many just like me battling epilepsy means a lot to me and them too.  The communication I have with patients and their families affects me in many ways because what they are going through helps me to see what my own family deals with when it comes to me.  Living with epilepsy is a journey that many need to know about and that’s why I am doing everything to help the survivors and tell others my story. 

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

I would like to get a law passed.  Me being involved in that tragic accident that happened years ago, and some of the things I experienced from that, as well as knowing there are similar stories like mine, I want to get a law passed that will have better communication with doctors and patients when it comes to driving privileges.  Still working hard on that but I know there is a lot more work to do on that particular goal. 

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

Angels of Epilepsy Foundation is located outside of Atlanta, GA.  All of our information is located on our website at www.aoepilepsy.org. 

I would like to thank Natalie for her time and for everything she does to bring comfort to the families of those dealing with epilepsy. I look forward to reading her book and knowing more of her personal story. Thanks, Natalie!

(p.s.: send information on the Purple Pastry Party - that sounds right up my alley!) :-) 

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!

10 Tips for Caregivers While Traveling

My friend G-J Heins and I created these "10 tips for Caregivers While Traveling" for Caregiving.com which is celebrating National Caregivers Month. We would love to hear your travel tips for caregivers so please leave your suggestions and lessons you've learned in the comment section below. 

 

Trish and G-J at Disneyland

Trish:  I have never considered myself much of a traveler, probably because I grew up in Nebraska and only traveled to Kansas, Missouri, Iowa and South Dakota during my first 17 years.  See a theme? All surrounding states. I had always dreamed of going to California – my friends and I discussed California at length without really thinking we would ever get there: the beaches, the movie stars, the surfers, Hollywood – heck, we were sure we would be “discovered.”  I was not the least bit disappointed, though, when these stereotypes didn’t materialize when my family moved to Sacramento when I was 17.

In fact, driving to our home from the airport I saw freeway signs pointing toward San Francisco and Los Angeles and even though they were hundreds of miles away, I could hardly contain my excitement.

As a young adult, Other Brother and I drove to Los Angeles on a whim. I later drove to Hollywood with a friend without much planning at all. After those trips, I traveled around the country for several weeks one summer with my first husband.  We mapped out a general route, took our tent and sleeping bags and a few dollars to stay in a hotel every now and then. Our route included stops at relatives’ homes scattered across the country who were generous with their couches and food.

Traveling became less “on a whim” and more “we need to plan every last detail” as I raised kids and Richard’s back issues worsened. Now that Robert lives with us, planning a trip takes months of work and the hope that the trip will have some relaxation built-in to recover from all the planning!

Here’s hoping a few tips gained from our experiences will help other traveling caregivers:

1.                  Have a back-up plan.  If Richard and I plan a trip, I need to arrange care for Robert. Because Robert is disabled he is a client of the local Regional Center and his service coordinator finds “respite care” for him. Even though we started the process six months in advance, it was only recently a facility was found for him. Richard and I are going on the Caregiving.com cruise which is happening within days so I was a little nervous cutting it so close. Because I am who I am, while the service coordinator was finding a care home for Robert, I was developing a Plan B for home care and joked that if care wasn’t found, I would drop Robert off at the service coordinator’s house or Other Brother’s house. Fortunately, plan B (or C and D) were not needed. 

2.                  Prepare a care plan. Once a facility was found for Robert, we toured the place to be sure it was suitable and Robert was comfortable there. I sent a Care Summary to the administrator (listing all medications and doctor information). I also created a “What to Know about Robert” document which will let the staff get to know Robert quickly. I also arranged to have Other Brother be the emergency contact and provided the facility with the Durable Power of Attorney documents which gives both me and Other Brother permission to make decisions on Robert’s behalf.

3.                  Count the meds.  I had to check all of Robert’s medications to be sure he would have enough for both his Day Program and the facility while we were out of town.  Robert will have enough medication while we are away but I would have had to make arrangements to have any refills picked up if there was not a sufficient supply for him.  Richard has to count his medications as well and is running into a problem with one of his meds that he will run out of while we are on our trip. He will talk with his doctor at his upcoming appointment to see about getting samples to last him the last few remaining days.

4.                  Carry medications with you. We learned this the hard way during our last trip. Richard was worried about having to explain all the medications to every TSA agent we encountered so packed the meds in his checked suitcase. Which was then lost for three days. Going through withdrawals on vacation is not at the top of anyone’s list but we will not make that mistake again. 

5.                  Plan for rest and recovery periods.  Richard has extreme pain when standing or sitting for long periods of time. He is unable to “rush” from one airport terminal to the next without experiencing terrible, debilitating pain but we have done this in the past due to plane delays and/or poor planning. When planning our trips now, I am very careful to plan flights giving us enough time to semi-leisurely make it to the next gate if we have to change planes. However, we don’t want too much time because then the travel day gets to be too long which also causes pain. Regardless of these considerations, building in a rest time before the next activity is essential. If our cruise leaves on a Monday, then we travel on Saturday so Sunday can be a day to recover.

G-J:  Growing up, I never went on a family vacation. My family of five moved from New York to California when I was three, and I guess that was more than enough for my parents! After that, going to summer camp was the vacation. About the time I got married, my parents decided it would be fun to vacation with us. This started about 16 years of family vacations, even including one of my brothers on one trip!

After our son was born almost 17 years ago, my Dad’s health declined, making travel a bit more challenging. Both of my parents passed away before my husband was diagnosed with Mild Cognitive Impairment (MCI), a possible Alzheimer’s precursor that added a new level of excitement to travel!  My tips are based on lessons learned from traveling with my Dad and my husband.

6.                  Don’t be afraid to borrow a wheelchair.  Before traveling, find out what assistance is available during the trip. Airports usually have free wheelchairs plus you can usually get a ride from the person driving the cart if there are mobility issues. Your caree might not be comfortable asking for assistance, so you’ll need to do this. Amusement parks, malls, and museums often have wheelchairs available for use as well. Check on this in advance and find out what needs to be done for access to this assistance so you won’t be scrambling at your destination when you arrive.

7.                  Take advantage of the assistance that is offered.  If you are flying and your caree has a difficult time, moves slower than most people, or is thrown off by noise or crowds, make sure you board the plane when they allow on anyone needing assistance. When you arrive at the gate, get your caree settled into a chair and talk to the person working at the counter so you can let them know you will be boarding early. Not every need for assistance is obvious, so this will give you time to answer any questions they might have.  If you are meeting people at the airport and they might need extra assistance, arrive at the airport early, park the car and ask for a gate pass at the counter. This will allow you to go through security, following all the TSA regulations, and meet your party at the gate, smoothing out their arrival as much as possible.

8.                  There can be too much togetherness.  When you travel, remember that you don’t have to be together with your travel partners every second of every day. When you’re at home, you do different things and you aren’t in one room of the house all the time. If they will be safe, let your caree stay behind in the hotel room and take a nap while you get out. You can sit in the lobby and people watch if you don’t want to go too far. If your caree cannot be left alone, try to book a hotel room that is more of a mini-suite with a bedroom and living area. Your caree can relax in the bedroom while you enjoy some time by yourself in the other part of your hotel room.

9.                  Watch the airport bathrooms!  Especially if you are traveling with someone of the opposite sex, airport bathrooms can present a real challenge when you travel. Some airport bathrooms have more than one door which may cause your caree to exit into another part of the airport. Before sending them into the bathroom alone, ask about the entrances and exits. If possible, have them use a family bathroom which will have only one door and no other people in it.

10.              More on medications.  Trish covered medications but I’m going to talk more about them. First, plan ahead, way ahead to make sure you have enough medications for the vacation and beyond. You want to take enough medications for you for every day of the trip plus enough for a few extra days in case you are delayed or any pills are dropped and can’t be recovered. Your pharmacy can get a vacation allowance which will let them fill prescriptions early. You don’t want to leave anything related to the medications until the last minute or you may encounter challenges you can’t overcome. On our last trip, I started working with the pharmacy over a month in advance. When I picked up the prescriptions before the trip, one was missing. There was a problem getting it refilled and they had to contact the doctor for assistance in rectifying the problem.

Plan for the worst when it comes to medications. I fill my husband’s three 7-day pill boxes for our trips, plus take any extra pills in their original bottles and I take a copy of every prescription, the phone numbers for the doctor and pharmacy, and my color-coded prescription chart for my husband. I carry all of the medications. If there is a problem, my husband can breeze through security and I can explain the situation to the TSA agent. Although everything I take sounds like overkill, the extra medications and prescriptions were suggested to me by a pilot’s wife. I thought that if anyone was familiar with the challenges of flying, it would be her!

When you travel, unless you are going somewhere remote, remember that as long as you have the medications with you, you can buy almost anything else you need.

Happy Travels!

Trish & G-J

10 Tips for Caregivers Caring for those with Epilepsy

November is both Epilepsy Awareness Month and National Caregivers Month and since I like to multi-task, I thought this would be a good day to bring the two “awareness” months together.

 

Robert and his helmet

My good friend Denise Brown of Caregiving.com is publishing “10 Tips for Caregivers” each day in November and my contribution of tips is for those caregivers caring for someone with epilepsy. (A friend of mine and I also wrote 10 Tips for Caregivers While Traveling which will be posted here and on Caregiving.com on Friday.)

This is going to sound crazy but I am stumped.  Call it writer’s block or a brain freeze or the effects of it getting dark at 5:00 p.m. I am staring at a computer and have no idea what tips to give someone who is caring for someone with epilepsy.

Maybe it’s because epilepsy is normal to me. Robert has had epilepsy his entire life so seizures have never scared me but I know they can be scary.  Now that Robert lives with me and Richard, I think I have to take it back that seizures are not scary. What scares me now is Robert’s long seizures (in his case, three to five minutes).  His chest heaves as his breathing becomes labored, his hands twitch or tug at his clothes, he is unresponsive and the stop watch on my phone keeps racking up the seconds. The minutes. More minutes. 

Okay, yeah, seizures can be scary.

Some of these 10 caregiving tips will focus on what to do when a person is having a seizure. 

1. Don’t panic. Reassure others in the area and explain what is happening.  Robert’s seizures are called Complex Partial Seizures and they usually last 10 – 20 seconds. If you don’t know what to watch for, the seizure could easily be missed.  During his last hospital stay, a nurse was helping him get dressed on discharge day. I was talking with the doctor but out of the corner of my eye I could tell the nurse was trying to get Robert to respond and he wasn’t answering her. I took one look at his head dropped down and to the right and his limp body and explained to her he was having a seizure. By the time I finished explaining this to her, he was awake and joking around with her. She looked surprised but I like to think she learned a little bit more about epilepsy that day.
2. Keep the area clear. This is both during a seizure and in the general living area. When living independently, Robert has fallen on a lamp (which was on) during a seizure. As a guest in my small apartment many years ago, he fell on a glass tabletop.  Through the years, he has hit the floor or sidewalk, dented walls with his head, fallen into coffee tables or tables and fallen against toilets so hard, he broke them.  Robert lives with us now and is constantly supervised so it is no longer possible for him to fall on a lamp and sustain 3^rd degree burns. His pathway is clear in case he has a seizure while walking and I keep him clear of glass or windows.
3. Time the seizure. Even though Robert’s seizures usually last 10 – 20 seconds, I like to time them. If his seizure hits five minutes, I have medication to give him to stop the seizure. I have both Ativan and Diazepam – although I’ve only used Ativan for him so far.
4. When to call the paramedics. It isn’t necessary to call 911 every time a seizure hits but if you are familiar with the seizures and a particular seizure is lasting longer than normal (and especially if they are longer than five minutes) or if the person has been injured or cannot breathe, call for help.
5. Do not put anything into the person’s mouth. This is extremely important and also a good time to dispel the myth that people having a seizure can swallow their tongue. No they cannot. Not too long ago, I read a celebrity had helped someone with a seizure and they stuck a wallet in that person’s mouth so they wouldn’t swallow their tongue. I cannot believe this myth persists so help spread the word that it is not true.
6. Turn the person on their side.  If possible, turn the person on their side if they are on the floor (or have fallen) during a seizure. Move anything that might hurt the person out of the way.  Do not try to stop the person from moving.
7. Keep a seizure log. Keep track of the time of the seizure, the behavior of the person during the seizure as well as after the seizure, anything that immediately preceded the seizure (such as eating or showering). This is useful to give to the neurologist and to try to track any seizure “triggers.”  Robert has a seizure almost every morning while getting cleaned up for the day. Seizures are not usually predictable so it is comforting to know I can “prepare” for the morning seizure. Probably one of the worst things about seizures is not knowing when they will strike. If anything, the log will allow you to look back to see if there are patterns to the seizures.
8. Medical Equipment.  Robert wears a helmet which has saved him from many head injuries.  Unfortunately, he didn’t start wearing one when he should have (which was when he was a child and into young adulthood).  If balance is an issue, then a walker may become necessary.  I am holding off putting Robert into a wheelchair until absolutely necessary but we do use one when going on long excursions.
9. See a neurologist regularly. It’s important to see a neurologist so he or she can adjust medications if needed or to inform the patient and caregiver of any new medications or treatments that might be available to help reduce the seizures.
10. Educate yourself.  1 in 26 Americans will develop epilepsy in their lifetime. 3 million Americans and 65 million people worldwide have epilepsy. 50,000 people in the United States die from epilepsy related reasons. These are just a few of the facts about epilepsy. There are several wonderful advocacy and educational organizations with lots more information on epilepsy and seizures. CURE (Citizens United for Research in Epilepsy) is one such organization and I was fortunate enough to be able to interview them for Epilepsy Awareness Month. For more facts about epilepsy and ways to help, please read the interview and visit their website.

I hope these 10 tips for those caregivers caring for someone with epilepsy have been helpful. Please let me know your own tips and experience with seizures and epilepsy in the comment section below.

Oh, and do me a favor and educate one person this month about epilepsy. Just work it into a regular conversation and tell them one fact. Epilepsy research is sadly underfunded and the more people know about epilepsy and talk about it the more research dollars we can get and the less stigma there will be about epilepsy.

Thank you!