End Epilepsy

I know I've said it before, but it'd be great if we could end epilepsy, stop seizures from happening, change lives, etc. by snapping our fingers or praying or wishing or wiggling our noses. In lieu of that, we can walk and support those who are working toward that end and those that are living well with epilepsy and those that are living the hell that is epilepsy. 

Please consider donating to Team Sophalofa. Here's a copy of our page on the walk website. Below it is the link for your donation. And if you feel like it, please just come out and walk with us at the Rose Bowl! We'd love you to join our team!

Team Sophalofa

Welcome to our team page for the Walk to End Epilepsy! 
The epilepsies are the world’s most common, serious brain disorders worldwide with no age, racial, social class, national or geographic boundaries. Seizures steal moments and memories, can change lives, impact development, affect learning and can even result in death. There are no cures. 

As most of you know, our Sophie has had epilepsy since she was three months old. We walk every year at the End Epilepsy Walk to help raise awareness about epilepsy, to advocate for research and treatment and most of all to support our fellow companions on this often arduous journey. We are fortunate to have finally found relief for Sophie from constant seizures through cannabis and are passionate in our support of medical marijuana. We believe that every family should have the option to explore this treatment, particularly with refractory seizures and are happy to answer any questions about it. We are so grateful for all the hard work of the EFGLA, for Sophie's supportive neurologist, and for our family and friends. We hope you'll come and walk with us and/or support our team with a donation. See you soon! 

 For the reasons above and many more, we have banded together to participate in the Walk to End Epilepsy on Sunday, November 22, 2015 at the Rose Bowl Stadium in Pasadena to END EPILEPSY.

Please support our efforts by making a donation to the team or a member of the team. Your involvement provides care, advocacy and education today while investing in research and hope for tomorrow. 
Your contribution makes a difference. Thank you!

LINK TO MAKE A DONATION TO TEAM SOPHALOFA IS HERE.

The Walk to End Epilepsy and Oliver's Lemonade Stand

I have literally nothing to muse or mull about today, but the Epilepsy Foundation of Greater Los Angeles did send me the following link to the EndEpilepsy video which features OLIVER!

Check it out:

The Epilepsy Walk at the Rose Bowl and the Disappointing Fate of Ollie's Lemonade Stand

Oliver, his friend Mac and The Husband were up past midnight last night, preparing lemonade and chocolate chip cookies for today's End Epilepsy Walk at the Rose Bowl in Pasadena. This morning, they rose at 5:30 to pack up the car and drive over there to set it up:

Henry, Sophie and I joined them a few hours later:

Ollie's Lemonade Stand was in full swing when we got there, and some of my favorite people came to support us and Team Sophalofa:

Here's our team:

Here are some random shots:

Here's the Quarterback of UCLA's Bruins -- very cool guy who brought in a ton of money in honor of his sister who has epilepsy:

Here's Oliver with Henry, a seizure dog, courtesy of a canine therapy group that was founded by a high school classmate of mine in Atlanta, Georgia!

So, all was well -- until the unexpected happened. The Health Department showed up and Shut Ollie's Lemonade Stand DOWN for operating without a permit.

Holy crapola, right? And what the hey and WTF?

Oliver was devastated, to tell you the truth. He and his father had worked so hard, and he had hoped to make many hundreds of dollars, a significant portion of which he intended to donate to the Epilepsy Foundation. Yes, we told him how proud we were of him, how this was sort of a lesson in entrepreneurship, how frustrating these things are (it was difficult not to rant and rave against a bullshit government agency, but we didn't. I think at one point, The Husband who is generally quite the ranter and raver, particularly about America, said that the guy was just doing his job). It looked like the whole day was going to be ruined for him -- Oliver is not one to let things roll off his back, and I steeled myself for gloom and doom and sturm und drang. But do you know what that boy did after moaning and groaning a bit? He proceeded to help the Epilepsy Foundation give out the lemonade and chocolate chip cookies for free. Here he is being interviewed as a sibling of a person with epilepsy. I'm not sure where this footage will appear, but I'll keep you posted.

I was in tears and so proud of him.

So, all in all, the lemonade stand was a success in that Oliver learned about starting a business and dealing with the inevitable frustrations that come with entrepreneurship. They also made a good amount of money before the shut-down, and hundreds of people enjoyed the best lemonade and cookies in Los Angeles.


Thank you Craig and Carmen, Lisa, Bridgette, Bob, and Maccabee for coming out to support us. And thanks to all of you who donated so generously. We love you!

If you'd like to donate to Team Sophalofa, it's not too late. Here's the link to help us to END EPILEPSY.

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!

The Purple Game to End Epilepsy

It was an amazing day, yesterday.

The Occidental College Girls' Lacrosse team out did themselves, supporting their captain, Lauren Wemple, who has epilepsy. Here they are pre-game, getting pumped and warmed up.

Here we are, pre-game, getting pumped and warmed up:

Here is Sophie, walking the field:

Here is Lauren and her friend Hilary -- before the game:

The team:

A bit of the game:

Here I am, making a short speech in the press box at half-time.**

Here's the team, graciously walking across the field, despite a very close game, lost by one point.

I'm so grateful that our family had the opportunity to do this with Lauren, to meet her and her beautiful team-mates, friends and family. I'm grateful, too, for my friends Susan and Lisa and their boys who came out to support us.  It was a memorable day for all of us.


**Here's my speech:

Hi, there! I am so honored to be standing before you this beautiful afternoon and to tell you a bit of our story. My daughter Sophie was born eighteen years ago in New York City, a typical baby girl, and my husband and I had expectations that she would continue to be a typical – perhaps extraordinary individual – whom we would love with all of our hearts. When Sophie was nearly three months old, she developed a rare form of epilepsy called infantile spasms that appeared, seemingly, out of the blue, and despite more than twenty-five medications, special diets and countless alternative treatments, her seizures continued unabated, daily, severely impacting her development and thrusting us, her family into a very different world than the one we had expected. We would never find the cause of her seizures, despite the best minds in neurology studying her.

Lauren has asked me to share her story as well. She describes her health as an ever-engaging, ever-developing, and ever-challenging facet of her life. Epilepsy has manifested itself in several different types of seizures for Lauren since she was 14. As time has gone on, she has faced these different forms of the disease head on, wanting nothing more than to subdue her symptoms and continue life as normal. The reality is, just as her body gets used to different medications and different doses, the symptoms of her epilepsy change. it has taken emotional struggle and years of frustration to finally come to terms that there probably will never be a complete solution. But epilepsy does not define who she is. It does not define her identity as an educated young woman, an NCAA athlete, a captain, a musician, a daughter, a sister, and a friend. She says she has accepted this difference and coped by putting her whole heart and body into living her life.

1 in 26 people will be diagnosed with epilepsy in their lifetime and nearly 3 million people in the USA have been diagnosed with epilepsy. An estimated 50,000 deaths occur each year in the USA from prolonged seizures, Sudden Unexplained Death in Epilepsy and other seizure-related causes. That is more than the number of deaths due to breast cancer each year. It is indeed sobering, and we are grateful to Lauren and the Occidental Lacrosse Team for bringing so much attention to our fight to End Epilepsy.  Despite the struggles of my daughter and the impact of her seizures on our family, my husband, our sons Henry and Oliver, we have much for which to hope. Recently, President Obama, probably your most famous graduate (after Lauren, of course!) mentioned epilepsy as one of the diseases that will be getting attention in the new Brain Initiative. We have all of you who know a little bit more today about this disease and its broad impact on our community.  We hope that you will go out and share it with everyone you know.

You know, despite the incredible hardships we’ve experienced as a family witnessing the devastating impact of epilepsy on Sophie, our expectation that we would have an extraordinary daughter whom we would love with all of our hearts has been fulfilled. Sophie is extraordinary. She inspires us every single day. She is brave and beautiful and graceful and worthy, and we are honored to share her story with you.  We know that Lauren is brave and beautiful and graceful and worthy, too,  (and a dang good lacrosse player!) and are proud to stand with her and her team and ask you to help us to end epilepsy.

Thank you for having us here.  Thank you.

Occidental College, Lacrosse, Obama's Brain Initiative, End Epilepsy and Us

The above photo is of lacrosse team captain Lauren Wemple of Occidental College, a young woman who is doing the Epilepsy Foundation of Greater Los Angeles and our family an enormous favor this Saturday afternoon. Lauren is a senior at Occidental College and has arranged a Purple Game, getting her team-mates and student body to participate in raising awareness and funds for epilepsy research. Lauren is evidently a kick-ass lacrosse player and also has epilepsy. I have not yet met her personally but have corresponded with her and am so impressed. My entire family, though, is so excited to meet her this Saturday afternoon when our family is being honored! How exciting is that?

You can read more about Lauren and her team here.

You can donate to The Purple Game here.

You can like The Purple Game on Facebook here.

Here's the website for the Epilepsy Foundation of Greater Los Angeles

You can come to the event on Saturday, watch some great lacrosse and hear our speeches both before the game and during the half-time. I will tell our story, talk a little about epilepsy and mention Obama's Brain Initiative (the POTUS is an alumnus of Occidental College).

I will be dancing, as well.

Just kidding. I wanted to make sure that you were paying attention! If you're in the area, please come -- the event is free and promises to be wonderful. And if you're not in the area, I'll post photos sometime over the weekend!

Team Sophie and the Walk to End Epilepsy!

The sky was a brilliant blue and the Pasadena sun relentless, but TEAM SOPHIE gathered at the BRAIN NOW bus at the Rose Bowl to walk together to help END EPILEPSY.

Here's our STAR: Gretchen  of Second Blooming who RAN a 5K for Team Sophie and raised more than $500! I adore her. Thank you, Gretchen!

Here's our INSPIRATION, Sophie in front of the Brain Bus. Those teams who raised the most money got their names on the bus. Thank you, everyone who donated!

Here's one of my best friends -- Cara -- who with her husband and girls triumphantly completed the 1K Stroll with us!

She has always been Sophie's and my biggest supporter, and I adore her, too.

Thank you, Cara!

Here's the whole TEAM SOPHIE -- friends, relatives and Sophie's caregiver, my friend Carmen with her entire family!Thank you to each of you. 

I'm not sure how much you realize what it meant to us to have you there, walking alongside Henry, Oliver, Michael, Sophie and me.

I just loved these ladies and their hilarious tee-shirts. As you all know, it's incredibly difficult to

keep calm during a seizure, and those of us in the trenches, dealing with it daily just want epilepsy to END.

 See you next year! 

If you missed donating, you still can! Visit Team Sophie on the End Epilepsy Walk page here.

Bumper Sticker Thoughts

See you tomorrow at the Epilepsy Foundation of Greater Los Angeles' END EPILEPSY walk. We're meeting all members of Team Sophie at the giant brain by the Epilepsy Brain Bus.

Thank you for all your donations and your support. If you haven't had time to donate, that's all right because there's still time. Just click here and join us as we indefatigably work for relief from this devastating disease.

As for the MAKE DINNER NOT WAR bumper sticker, I had the pleasure of meeting Jenny Rosenstrach, the author of the wonderful cookbook Dinner: A Love Story and blog of the same name.  She was at Chevalier's, my favorite independent bookstore in Los Angeles, signing her books. We chatted for quite a bit, and I can honestly say that I feel like I've known her forever! If you don't know her blog or haven't gotten her book, I highly recommend its incredibly family-friendly recipes. Jenny and her husband write beautifully and with much banter and wit about their life with their children. I have used the recipes on her blog and in her book over and over and can attest for their ease and deliciousness!

Help Wanted and The Epilepsy Walk

Looking for a scientist/humanitarian to find the reasons and cure for epilepsy, particularly pediatric cases. Applicant must know the brain inside and out and have witnessed the daily life of a child with uncontrolled epilepsy. Interpersonal skills a must as is a total disdain for insurance companies and dubious appreciation of pharmaceuticals. Assumption that pharmaceutical discoveries will be considered successful ONLY if side effects are minimal to nonexistent as defined by parents of child or child him or herself. Cure must be complete and total; 30% or 1/3 efficacy rate is not acceptable. Applicant must have ability to outwit the brain.

Sobering Statistics:

1. Epilepsy in America is as common as breast cancer and takes as many lives.
2. One in 10 people will suffer a seizure in their lifetimes.
3. The mortality rate for people with epilepsy is 2 to 3 times HIGHER than that of the general population.
4. The risk of sudden death for people with epilepsy is 24 times higher than that of the general population.
5. There are 200,000 new cases each year, and a total of more than 3 million Americans are affected by it.
6. This number is MORE than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease COMBINED.
7. Public and private funding for research lags far behind other neurological afflictions, at $35 per patient. Compare this with $129 for Alzheimer's and $280 for multiple sclerosis).

This Sunday, October 28th, is the Epilepsy Foundation of Greater Los Angeles' End Epilepsy Walk, and Team Sophie will be at the Rose Bowl in beautiful Pasadena, walking doggedly. I know these walks and ribbons and colored days can be tiresome -- I myself have taken a couple years off in a sort of anti-non-profit foundation sabbatical, but I'm back, as are Henry, Oliver, Sophie and The Husband. Sophie had a seizure last night, again, at the dinner table that would scare the beejesus out of any normal family (as Oliver put it). I desperately wish that they'd stop, and while I know it might not happen soon enough, with enough support, enough money and enough doggedness, some kind of impact against this scourge will be made.  I'm making a last ditch effort to sign up more members and get more donations, so if you'd like to support us, please go to the Team Sophie page! And thank you, thank you, thank you to all of those who have already donated or who are actually walking with us! I so appreciate it.