The Epilepsy Foundation of Greater Chicago has drafted a bill, the RAISE Act (Raising Awareness and Insight into Seizures and Epilepsy), and will continue to push for its introduction. RAISE would make it safer for students, workers and citizens with epilepsy to access emergency care, continue employment, and achieve an education. The Epilepsy Foundation strongly supports House Resolution 298 as a first step toward the introduction of the RAISE Act that would create a national epilepsy awareness campaign to increase the understanding of epilepsy and seizures in the workplace, schools and communities.
AJ may or may not have epilepsy – however I have come in contact with so many people, who they themselves have epilepsy, or who have family and friends who do, and so many of them children. As you all know I am having conflicts on the spiritual front, but I do sometimes believe things happen for a reason – and this disease was brought to my attention for some reason and thus I feel moved to advocate for those with this disease, or seizure disorders in general – regardless of her outcome.
Remember, in a previous post of mine I mentioned that there are 3 million people afflicted with this disease in the US (50 million globally). This disease is as common as breast cancer, in fact this disease is dated as far back as the 5th century (if not farther) and still has nearly the same stigma now, as it did then. Yes, we may not be burning people at the stake because we think they are possessed by demons, but people with epilepsy are still treated fairly poorly, due to so much that is misunderstood – and the numbers of those afflicted only keep growing, and 1/3 of them never find out why.
Also, sadly, treatments for this disease have not evolved fast enough as people need them to – the blame: the limited funds the foundation receives for research on an annual basis (and it’s about to get worse: http://on.fb.me/p2fDx2 ). So many people learn for what to look for well after the seizures have done damage to the brain. The internet has helped some of this evolution in the amount of knowledge shared – but even once a person knows what to look for – the causes, triggers and even finding the right medicine becomes a challenge and sometimes as (or more) harmful as the seizure itself.
While not trying to sound like a late night commercial that tries relentlessly to pull tears from your tear ducts: I do hope you will follow me and help support this resolution for the millions out there with this awful disease.
The info: (As taken from Epilepsy Marinhme Facebook page) “The U.S. House of Representatives House Resolution 298 is a bi-partisan resolution to help raise public awareness about epilepsy. As many of you know, increasing public understanding about epilepsy and seizures is one of the Epilepsy Foundation’s top priorities. House Resolution 298 is a great first step – strong support for this Resolution will help in the Epilepsy Foundation’s fight to educate everyone about epilepsy and give us a huge boost toward legislation that will help make every American “Seizure Smart”. Attached are letters for constituents of each state. Download your state’s letter, edit the capitalized phrases with your personal details, and forward the letter to your Congressional Representative. Find your Representative’s location information at http://capwiz.com/efa/dbq/officials/” (Epilepsy Marinhme, 1)
I am a small voice, and have a limited readership, but I hope that if you are reading this, you might forward it on and help them make a huge step forward. Thank you!