08/10/2011 10:04 pm ET Updated Dec 06, 2017

Loss and a Legacy

2011-08-11-bernadinehealymd.jpgI was stunned and saddened last night when I heard about the death of Bernadine Healy.

I had the pleasure of meeting Dr. Healy when I started spending time in Washington, DC a few years ago. Our mutual friend Tammy Haddad introduced us, knowing we would have much in common and much to share. We first met over cocktails, and then she graciously attended a CURE luncheon we hosted in DC. We exchanged a few emails, and then I lost touch. I had no idea she was struggling with a recurrence of brain cancer.

I was in awe, and a bit nervous, when we got together that first time. Here I was sharing drinks with a former Director of the NIH (not to mention the first female Director!). People like me were a dime a dozen-she'd likely met with way too many of us, and heard our sad stories. I was just another patient advocate looking for tips on how to advance my disease.

But, she immediately put me at ease, and made me feel as if epilepsy research was at the top of her agenda as well. It felt like we were long-time fellow crusaders, and she was full of wise suggestions and ample support and encouragement.

I dream of the day when we will have cured epilepsy, and that I can sit back and write down my reflections on all the amazing people I have met along this journey. So many individuals from so many different walks of life. They have all motivated me, each in unique and special ways, sometimes with just a single nugget that resonated with me, motivating and fueling-or re-fueling-my energy to keep up this fight.

Here's the nugget Bernadine left me with-words that I have thought of so often since she uttered them, and now will certainly never forget:

"There is no history of scientific progress in a disease state that has not been started and fueled by patient advocates. Keep up this good work."

I hope her words inspire you, as they did me, to strengthen your commitment to advancing epilepsy research. It began with us, and it will continue to grow -- but not without us.

Susan Axelrod is Chair and founding member of Citizens United for Research in Epilepsy (CURE).