Although epilepsy in America is as common as breast cancer and takes as many lives, it is still considered an “orphan” disease, according to NORD (National Organization for Rare Diseases.) Yet, more than 3 million Americans are affected by it—more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined. My guess is you are too…or someone you love.
But there is hope on the horizon…
Susan Axelrod’s organization: CURE: (Citizens United for Research in Epilepsy.) is as good as it’s name implies. It’s a nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease. Their purpose is to support research with the goals of “no seizures, no side effects,” along with advancing the search for a cure, elimination of treatment side effects; and the reversal of damage caused by frequent seizures. So far, CURE has helped raise federal expenditures for epilepsy research from $68 million in 1998 to over $100 million through the National Institute of Health.
The Epilepsy Foundation of America®is a national voluntary agency dedicated solely to the welfare of those with epilepsy in the U.S. and their families. They have education, awareness and support programs and a dedication to ensuring that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure. If you go to http://www.epilepsyfoundation.org/ you can find a local chapter in your area.
Epilepsy.com provides in-depth information and a community for people living with epilepsy. The mission of epilepsy.com is to inform and empower patients and families facing newly diagnosed epilepsy or those struggling with epilepsy that has resisted treatment. It is also the home of the Epilepsy Therapy Project whose mission is to create a powerful resource for everyone involved in caring for, or treating, those with epilepsy. So far, the Epilepsy Therapy Project has raised more than $6 million towards its mission.
I’m sure you can find even more resources on the web, but personally, these are my favorite three.
However, for this education, awareness, support and research to happen, funding is imperative. Therefore, you need to educate those around you so that they become informed — rather than misinformed — about epilepsy. Take epilepsy out of the “orphan disease” category and make it a condition that people understand instead of fear.
Turn the tables today and become an advocate. You’ll feel a whole lot better about yourself. I know that I do.
Resources:
www.cureepilepsy.org/
www.epilepsyfoundation.org/
www.epilepsy.com/
Copyright © 2009, Phylis Feiner Johnson. All rights reserved.
