On our September website, we were fortunate to be able to share an interview with our readers that Randy Siegel shared with us about his daughter. It is called, "The Voices of 3 Million People with Epilepsy Deserve to be Heard: An Interview with Randy Siegel, President and Publisher of PARADE." Shortly thereafter, the Providence Journal www.projo.com published thoughts as an Op-Ed. With permission, we reprint the story and attributions in its entirety. | The Editors

Randy Siegel: Getting out the epilepsy story

The Providence Journal

07:40 AM EDT on Monday, September 17, 2007

New York

MY COLUMN “More than hugs,” which appeared in the Aug. 23 Newsweek.com, is a story about our daughter, Rebecca, who we hope can one day “enjoy her pasta in peace.” But today, as with every day of her young life, Rebecca struggles with epilepsy.

In telling her story, I am trying to generate more public awareness of epileps ywhich 3 million people deal with every day in the United States. When you add family, friends and caregivers, the number is quite a bit higher. Epilepsy is a major disorder and deserves more attention than it now receives. I hope that more awareness will bring increased research funding for treatment, and one day a cure. So many resources are required.

[Epilepsy is a neurological condition, which affects the nervous system, it is also known as a seizure disorder. Seizures are a sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior.]

My wife and I are very involved in the epilepsy community. We try to be a resource for parents with children who are newly diagnosed with epilepsy. These parents have so many concerns and recognize that their children often have profound needs. But we meet many people of all ages who are struggling physically, emotionally and financially due to epilepsy every day of their lives.

We want to encourage others to tell their stories about their battles. More people need to understand the magnitude of the problem. We want to reach Congress, other policy makers, and anyone else who can make a difference.

Once the nation understands the size of the problem, we can be more effective as a community in making sure that the attention is where it should be. We must marshal our collective resources and make a more compelling case to the public and private sector on why we need more research and more research funding.

According to the CURE Epilepsy Web site in 2005 the National Institutes of Health spent $39 per patient for epilepsy, which affects some 3 million Americans.

The combined per-patient total for those who suffer with autism, multiple sclerosis and Parkinson’s is $607 and the combined total of those affected is 3 million people. This commitment of NIH funds is admirable and important for these three conditions. But we would like to see a comparable commitment made to people with epilepsy.

We are always grateful when the media give us an opportunity to tell others about people with epilepsy. While we receive great emotional support from family, friends and many physicians, one of the unnerving parts of this journey has been coming to realize the tremendous stigma still attached to epilepsy.

To advance the cause, we also gave an interview to the on-line magazine of the Epilepsy Therapy Project. Patients, parents and other caregivers of those with epilepsy go to epilepsy.com because it is a tremendous resource.

We hope that in some small way Rebecca’s story will motivate others to come forward. I have heard from a lot of people that this piece about Rebecca was a much more realistic portrayal of people who suffer from uncontrolled seizures than is often presented. Once again, we emphasize that there are millions of people with epilepsy, and each has a story to tell. America needs to hear their stories. We share our story to encourage others.

Randy Siegel is president and publisher of Parade magazine. This is published in cooperation with www.epilepsy.com and adapted from an interview by Rita Watson, epilepsy.com senior editor. This piece originated with “More Than Hugs” for My Turn, Special to Newsweek.com, Aug. 23, 2007, which can be viewed at http://www.newsweek.com/id/56667.