For the last few years with the help of our friends and the local community of Darien, we have endured the terrible tragedy of a rare disease called rasmussen's encephalitis. Now four years after our daughter experienced her first seizure and two radical brain surgeries, she is attending the High School and adjusting to a new life. As a result of our experiences, we have become a resource for individuals in town who unfortunately are being impacted for the first time by seizure disorders. When I receive these calls, I am saddened because epilpesy is a thief.
Epilpesy is an unbrella term that refers to a spectrum of seizure conditions and disorders. It's time for the epilpesies to come out of the shadows and take their place amongst our research and funding priorities. Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide. In two-thirds of patients diagnosed with epilepsy, the cause is unknown. There are approximately 50,000 deaths a year attributed to epilepsy. One in 26 people in the US will have epilepsy and the numbers are rising due a number of factors.
I started my quest to change the world of rare epilepsy research by finding the RE Children's Project in 2010 to focus on rasmussen's encephalitis. With the local support from the good people of Darien, we have shown the world what determination combined with the power of today's technology can achieve; in two years we have changed the direction of rasmussen's research. More recently, I have come to realize that rasmussen's is part of a larger community of rare epilepsies that we must address in order to gain a better understanding of seizure conditions. As a result, I recently joined the Board of CURE. CURE is a leading non-profit, 501(c)3 organization dedicated to advancing basic research into the spectrum of epilepsies.
There are too many people to thank for helping my family survive our ordeal, but without Blue Wave pride it would have been a lot more difficult. Please continue to support our efforts to bring the epilepesies out of the shadows by planning to support our annual fundraiser that will take place on February 2, 2013 at Woodway Country Club. Please feel free to contact me if you need assistance in obtaining advice or information relating to seizure disorders or syndromes, swohlberg@rechildrens.com
