So you know this blog is always meant to be informative and about Epilepsy simply from my point of view. I never “promote” anything but community and sharing of experiences. Today though, I want to share a passion with you. And if you feel so inclined, invite you to be a part of it with me…
I’m so excited I could you-know-what in my pants. However, I’ll save that for later lol and get to the point… I’ve been busting my butt to make this dream a reality and it is, finally! Thanks to the non-profit group LEAD OC, the Epilepsy Foundation Greater LA, University of California, Irvine Medical and Children’s Hospital Orange County, we have the opportunity to expand the LA Care+Cure program to Orange County. Through the “Paint the Town Purple” gala, we are kicking off a program designed to provide epilepsy specific neurosurgery fellowships and epileptologist fellowships!!!! Epilepsy specific care. All of us in the Epilepsy community know we can find a neurologist around every corner, but how easy is it to find one whom specializes in Epilepsy??? IT’S NOT. It’s time to stop “Band-Aid” epilepsy treatment and start creating a platform for better care and a cure for those of us with Epilepsy and our loved ones.
We don’t have nearly the voice we need for the 3 MILLION people in the US (and growing by 150,000 a year). After trying many (failed) neurologists and admiring the Epilepsy Foundation GTLA’s Care+Cure program, I thought- why not bring it here? Why not expand this program, starting here, to address the frustrating lack of access to well trained, knowledgeable Epileptologists and Epilepsy neurosurgeons? Why do we deserve underfunded programs and lesser attention for this very common but life-altering disease? Truth is, we don’t. I wanted this program in my community for the over 32,000 children, men and women diagnosed with Epilepsy in Orange County alone.
After a year and a half of persuading people to expand and participate in the program, all the parts have fallen together and better, skilled treatment can begin to be accessible to more people with Epilepsy. This is a dream come true for me, children and adults, and the entire Epilepsy community. The more we can expand advanced Epilepsy treatment and care, the more Epilepsy awareness spreads and we can begin a movement for the 3 Million of us in this battle together. I’ve often asked myself, with all the brave people sharing their Epilepsy battles and such a large population affected by the seizure disorder, why do we not have a unified presence like Susan G. Komen? (More people die from Epilepsy related issues than breast cancer every year, fyi.) Or a movement as strong as the Autism community? I’m not saying one cause is more important than the other; I’m talking about equality. Awareness. Education. And this is just the beginning.
The goal is to establish care for all seeking answers for his/her Epilepsy and begin to provide more hope for the families fighting this disease together. With less than 15 epilepsy specific neurosurgeons nation-wide, with only 2 using specific cutting-edge robotic devices on the West coast, we are starting here- For surgery is the closest to a cure we’ve got at the moment. The goal of the program is to then expand to Epileptologists next year. Not neurologists that can handle Epilepsy with a specialty in MS, Parkinson’s, etc., but whose sole focus is Epilepsy. What a dream. :)
I could write for days on how it happened, why it happened, what this means to all the epilepsy warriors, but I’ll save that for another time. For now, here’s some information and education…
I am profoundly grateful to all the players at the Epilepsy Foundation GTLA, UCI’s team, LEAD OC and CHOC for their enthusiasm and work-ethic. I never realized the tremendous amount of work associated with putting on an event and building a sustainable program. You all are SO amazing.
Please go to http://www.leadoc.org for more info on how you can “Paint the Town Purple” to END Epilepsy!
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