Monday, May 11, 2009

Newsweek Article

Dear Friends,

I don’t know if you saw the April 20th issue of Newsweek magazine, but the cover story was “The Mystery Of Epilepsy – Why We Must Find A Cure”. While I’m not exactly sure what the cover picture is, it could just as easily have been a picture of Jess or any of the other estimated 50,000 people who die each year from seizures and related causes. They are the reason why we must find a cure.

More than 3 million Americans are affected by epilepsy, more than number affected by multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined yet funding for epilepsy research averages only $35 a patient. (compared, for instance, with $129 for Alzheimer's and $280 for multiple sclerosis). As the author, Jon Meacham, states, “It is time to remedy that gap, and to raise epilepsy to the front ranks of public and medical concern.”

The reason that epilepsy research funding is so low seems to be based on public perception. People think that epilepsy is not a deadly disease. We know different. People think that epilepsy can be managed through drug therapy, and while that is true for about 2/3 of people diagnosed with epilepsy it is not true for over 1 million people. Individuals with epilepsy may not have daily or even monthly seizures, but the fear of a seizure is constant. Epilepsy is not always visible to the public, but as we saw with John Travolta’s son Jett, a seizure in the midst of an everyday activity like taking a shower can be deadly.

Jess’ life and death showed us the reality of epilepsy. There were good days and bad days. We were always going down on one medication and up on another, following the charts made by Dr. Ritter. There were surgeries, hospitalizations, MRI’s and ECG’s. There was hope and despair. In the end she was taken from us by a seizure in her sleep that kept her brain deprived of oxygen for a prolonged period of time.

That is why our goal with the Journey For Jess is to raise money and awareness for people affected by seizure disorders. So that we can fulfill the Epilepsy Foundations motto and make a world where there is “not another moment lost to seizures”.

To see more of the article please go to

No comments:

Post a Comment