A Sight for Sore Eyes and Weary Hearts

Henry came with me today to volunteer for Family Day at the Epilepsy Summit. Not only was I surrounded by my peeps -- vastly superior to yesterday's clusterf*&k, but I had my incredibly handsome, sweet boy there to claim as mine. It was a fine day, filled with community and amazing stories and families connecting to one another. The Epilepsy Foundation of Greater Los Angeles and The Charlie Foundation are such wonderful organizations -- we are all so very grateful for what they do.

Cake, Lemonade Stands, Homeschooling and The Walk to End Epilepsy

That's going on: cake baking. Today's order is for a Red Velvet Cake with Vanilla Buttercream Frosting. I have to decorate it, too -- a wacky Coupon Diva logo. Later, I'm making an Hallelujah cake for a friend's birthday party. The Big O is working on his lemonade stand that he'll be manning at this Sunday's End Epilepsy walk and 5K at the Rose Bowl in Pasadena. He and The Husband are making it into quite a project -- a homeschool project, actually -- with real food and labor costing, profit margins, etc. Oliver has "hired" two friends to help him out, and the Epilepsy Foundation of Greater Los Angeles is providing a booth, table, chairs, tablecloth and, of course, thousands of patrons. I believe there will be lemonade and cookies (home-made of course) for sale for hundreds and when they're out, they're out. A significant portion of the proceeds will benefit the work to End Epilepsy.

In case you aren't around to have some of the best lemonade in town, you can still contribute to the walk by going to our Team Sophalofa page and making a donation. Any amount is welcome -- our local affiliate -- the Epilepsy Foundation of Greater Los Angeles -- is a terrific one whose director and other employees work incredibly hard in responding to those of us in the community. They even, most recently, have attended informational conferences regarding this whole medical marijuana thing and are organizing efforts to find out more. Given how top heavy many non-profits are, and how so much money goes to schmoozing and administrative costs, it's so refreshing and encouraging that the EFGLA is so responsive to its members. The walk is at the beautiful Rose Bowl in Pasadena, something that we look forward to each year.

Join the Walk to End Epilepsy, Drink Lemonade from Ollie's Lemonade Stand and Eat Cookies!

Living Well With and the Living Hell of Epilepsy

For many, many years, efforts to remove the stigma that epilepsy carries focused on a "living well with epilepsy" approach. "Normal" people who also "happened" to have seizures but who otherwise lived "normal" and productive lives were paraded out in advertisements and marketing materials, and while this helped to dispel myths about epilepsy, the approach neglected a significant number of people whose lives were severely affected by the disease. What happened because of that is a woeful under-funding for research into the causes of and cures for the epilepsies, and, equally as important, a lack of knowledge and awareness of just how serious the disease can be, including a higher incidence of death than breast cancer. The mental health aspects of the disease -- for both the person suffering the seizures and the parents and siblings of that person -- are often unacknowledged despite grim statistics, and the work I've done recently with national groups trying to remedy the inadequacies of the healthcare system have only just pecked at the surface. I call that number -- the nearly 30% of people with epilepsy whose seizures are not controlled and whose lives are significantly impacted by the diseases as those who are experiencing The Living Hell That is Epilepsy.

With that in mind, the Los Angeles affiliate of the Epilepsy Foundation of America produced the following video that they showed at their most recent fundraiser. I think it deserves to be seen and shared and would appreciate you doing so if you have a moment.