She also makes a point which really hit home with me: in order to get more funding for epilepsy awareness, treatment and research, people who are not directly affected by epilepsy need to be involved. They need to be a part of the equation.
Right now, let me get out of the way and let Gina tell you more about her passion for epilepsy advocacy:
Robert’s Sister: Tell us how you are involved with epilepsy advocacy.
|Tom Stanton, Danny Did Foundation, Gina Restivo |
(and her son Sam) Chip Gilbertson (co-author Fly Danny, Fly)
Laura Forney, Recording Artist, Troy Swanson, Gap Kids
Robert’s Sister: How did you get involved in epilepsy advocacy? Do you have epilepsy or know someone who has it?
I do have a nephew who has Epilepsy, but have learned most of what I know through my Facebook connections and from people who have reached out to me through that avenue. Certainly Fly Danny, Fly also fueled my fire in that at book signings or events, I do a lot of talking about Epilepsy to people who are not familiar with it in many cases. So, I have tried to understand a bit about how it is to live with Epilepsy through the many I have come to know who struggle with it. Even though I am far from truly understanding it, I think I do well talking with others who don’t have Epilepsy in their lives and stressing the importance of funding and research.
Robert’s Sister: What is your mission with regards to epilepsy?
To get doctors to talk about SUDEP each time an Epilepsy diagnosis is made. To help The Danny Did Foundation and The Chelsea Hutchison Foundation through spreading their word. To most of all, bring the attention of the general public not suffering with Epilepsy to this devastating condition, and to hopefully help eliminate the stigma associated with seizures.
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?
I am passionate because I have over 3,000 Facebook friends who all struggle with Epilepsy or have children or loved ones who do. Through FB, I know over 70 people who have lost loved ones to SUDEP. For every sad story, there is so much courage and so much appreciation for the GOOD days in this group. I think that people who battle Epilepsy have learned how to live in the moment, and to be thankful for the seizure free ones. Hard to NOT fight for this group. I’ve met so many inspiring people!
Robert’s Sister: How has epilepsy affected your life?
Certainly hearing about Danny Stanton dying of SUDEP, something his parents were never told could happen, enraged me. But the way that Danny lived his moments is what started me on this journey to live my moments more fully. Danny Stanton inspires me every day. There are days where I have to stay away from my computer….days when it’s too hard to read. I don’t have Epilepsy and my children don’t either. Yet Epilepsy has affected the way I view my own life and the way I view my purpose. The people who struggle with Epilepsy and the foundations that support them have inspired me to spread the word. I find ways to do that.
Robert’s Sister: What do you see as the greatest need for epilepsy awareness or research?
Getting people who are not directly affected by it to understand the magnitude of this condition. I think that this is the most important group to reach out to for someone like me who isn’t directly dealing with it. People have no idea how serious this really is. The foundations like Danny Did and the Chelsea Hutchison Foundation are focused on getting information to people, subsidizing service dogs and seizure detection monitors, and keeping people alive and informed until a cure is found. But when it comes to actual funding for research, there needs to be a public outcry from more than those suffering with Epilepsy and the foundations supporting them. Cancer research is funded by millions of people who are not directly affected by Cancer. We need that here. We need public awareness. A good way to begin would be to teach kids in schools how to respond to a seizure. Not just in some schools, but in ALL schools. That teaching would lead to questions about Epilepsy and an eventual answering of those questions either through a public campaign, or a group of kids who want to learn more. Something like that is so needed here, in my opinion.
Robert’s Sister: What do you want people to know about epilepsy?
That it takes precious lives. That there are many different kinds. That 1 in 26 have it. That I could be diagnosed tomorrow and so could ANYONE. That it is random and merciless. That it needs our attention and our dollar.
Robert’s Sister: Is there anything else you want to say?
Just that I hope the Epilepsy organizations are able to join forces a bit more than they have. One voice powered by millions is louder than the scattered voices of that same group.
Robert’s Sister: Please tell us a bit more about you or your organization and how we can contact and support you.
If you’d like to purchase Fly Danny, Fly, it is available at www.pigupstation.com. Speedy Shines will be available in January on www.Amazon.com.
Robert’s Sister: Thank you, Gina, for your continued work toward epilepsy awareness and funding! Your support and drive is much appreciated.
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 firstname.lastname@example.org.