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.

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.

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.