Showing posts with label The Epilepsy Network. Show all posts
Showing posts with label The Epilepsy Network. Show all posts

Friday, November 4, 2016

Epilepsy Awareness Month: Follow-up Interview with Tiffany Kairos

I am thrilled to have Tiffany Kairos in our space today! Tiffany was gracious enough to talk with me for our Advocating for Awareness and Answers series in November 2013 and I am grateful she is participating in the 2016 Epilepsy Awareness Month "Life with Epilepsy" follow-up interviews.

Tiffany Kairos shares her Life with Epilepsy
Tiffany and I have never met in person but getting to know her through her advocacy work, social media and these interviews has been such a delight! Tiffany is a kind, faith-driven, family-focused and strong advocate for those with epilepsy as well as those less fortunate.

She would never describe herself this way (because she is way too nice and polite to do so) but she is definitely a badass! Epilepsy, discrimination against those with epilepsy and any kind of bullying doesn’t stand a chance against this woman.

I think you will agree once you read more about Tiffany.

Robert’s Sister: I interviewed you in November 2013 and I am curious what changes have occurred in the last three years. What is the most significant change in your life since our last interview?

Since our last interview, I had much testing conducted and discovered that my type of epilepsy is Refractory Epilepsy. This gave me peace in knowing and motivation to fight back.

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

I'm the founder of the organization The Epilepsy Network (TEN), working passionately and diligently to provide education, awareness and community for all affected by epilepsy.

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

Each day, progress in the field of medicine and treatment is evolving and I am pleased to see this. I see more options becoming available for those who are running out of medicinal options or who would rather choose a more holistic route.

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

It's very difficult to choose just one favorite moment when there have been so many wonderful moments throughout these last three years. However, I would most likely have to say the moment I was given the opportunity to share my story on video for my church community and the world to see and having the opportunity to illuminate our town’s bridge in purple light.

(Note from Robert’s Sister: Grab the tissues and watch Tiffany’s inspirational video about her story here.)

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

I can't say for certain; however, I know that whatever it is, wherever we are, God will be with us and epilepsy awareness will without a doubt be involved.

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

I would like to tell anyone who is affected by epilepsy in any way that some of the most challenging situations we face in our lives are in fact refining us into much stronger, braver, bolder individuals. Hold onto hope. Don't ever let go no matter how hard things get.

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

You can contact The Epilepsy Network at www.theepilepsynetwork.com.


Tiffany didn’t mention this in her interview but I am happy to share that Tiffany was chosen as a finalist in the WEGO Health Awards, Best in Show: Twitter category. Be sure to follow Tiffany on Twitter! You can find her on Facebook as well.

Tiffany is a fighter and we wish nothing but great things for her and her husband, Chris. Thank you so much, Tiffany, for sharing your advocacy work and your story!

Trish






Saturday, November 30, 2013

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.)