There was a fantastic piece written by Lynda Resnick that circulated around the web late last week. If you don’t know Lynda Resnick…you probably should. She is a marketing powerhouse, a woman who has taken some brands and companies we know and turned them into major players: POM, Telefora, FIJI Water…to name a few. Yes, she is a dynamite business woman, but she is also the mother of a son with Epilepsy.
Apparently, there was a meeting of leaders of various Epilepsy organizations early last week, and Lynda was asked to be part of that meeting. They were charged with compiling suggestions on “how to overcome some of the most daunting obstacles facing this cause.” Some would say their conclusions were ones that have been offered already, still they were profound:
-Epilepsy is very prevalent in this country and frankly throughout the world. The disease or the condition…whatever you’d like to call it, affects one in one hundred Americans. It does not discriminate based on sex, age or race. It’s extremely unpredictable and can have incredibly serious affects on a person’s life and their future.
-Epilepsy is misunderstood and many carry a stigma against the disease. So many are hesitant to even admit they live with Epilepsy, and this deeply affects our ability to promote research, advocacy and care.
-We’ve heard this before, but we must continue to realize that with the advances in brain research, a cure for Epilepsy could be imminent. But, until we begin to acknowledge the condition and fight for recognition, it is difficult to move the needle. As Lynda says in her piece, “It is time to come out of the shadows and join our cause.”
She, like so many who are close to Epilepsy, encourages us to become a united community. We must be clear in our facts and we all must do our part to promote awareness. I think, along with coming out of the shadows, we must be sensible and honest with people about our cause. Organizations can’t mislead people. If an organization highlights the effects of SUDEP, they must tell people that SUDEP affects not only children, but also adults. Epilepsy as a disease affects both children and adults, and many times the effects on adults who have lived with it for most of their lives can be just as devastating. We must come together as a community, if we are the ones who promote the fact that Epilepsy does not discriminate!
It’s not too daunting of a task. There are other organizations around this world which have done a remarkable job uniting and spreading their mission. Wouldn’t it be equally as remarkable if Epilepsy became as talked about as Breast Cancer?