Monday, April 22, 2013

Kids Speak Up!

Greetings from Washington, DC where I am the invited guest of the Epilepsy Foundation of America at their annual Public Policy Institute and Kids Speak Up lobbying event.

The EFA sent my son and me on this trip in the hopes that we would tell our story about epilepsy, and how it has effected our family, to our congressional representatives on the hill.

I did not know what to expect about this event at all, but after the opening evening, I feel excited I came and filled with hope about a million new possibilities for epilepsy treatment. 

I met a mother whose son would have back to back-almost continuous seizures and now he has a Vagus Nerve Stimulator which has almost controlled them.  I met a mother whose daughter has a service dog for seizures.  I met mothers and fathers with grown children living with epilepsy.  I met Joyce Bender, the founder of  Bender Consulting, an organization dedicated to finding jobs for people with disabilities and the host of a radio show on disability, herself a person living with epilepsy.  I’ve met doctors and board members and other teenagers.  I’ve gotten to know two lovely people from Indiana, also part of our delegation.

Everyone hugs me. Everyone makes me cry.  Everyone has a story that is similar to my own and yet different, and for the first time I feel like I am not alone in trying to understand what is happening to my son. There are thousands of us trying to understand what is happening in the brain when seizures take over.

Other than fantastic networking, I attended the keynote session at dinner which was about advances in drug treatment.  I was dreading it.  I pictured a dry speech, full of jargon and numbers of clinical trials.  I imagined the speech equivalent of that tissue paper flyer you get with all your drugs, printed in microscopic font, full of statistics and chemical names.

But what happened was a great doctor explained how clinical trials work, how new medicines are developed, and what are some of the current medicines about to breakthrough and help those of us living with this nightmare.  Here are some of the things I learned:

  • There is a revolutionary new drug being developed that is a relative of phenobarbital.  (the granddaddy of them all) The drug, T 2000, was developed and worked miracles and before the developing company had a chance to market T2000, a bigger drug company bought them and it owns the drug and refuses to do anything with it. Why? Not interested in epilepsy, not a big enough market.  So the pharmaceutical company is holding a bunch of molecules hostage. 
  • Medical marijuana is a possibility for treatment of epilepsy.  Apparently a pharmaceutical company in the UK has fields of marijuana grown and is ready to start synthesizing canniboids in the treatment of seizures. But we are cautioned, don’t run out to your nearest medical marijuana store and start your child smoking.  The whole marijuana plant may not be very good at all and we should wait for the tests.
  • Doctors and drug companies are sorely in need of test subjects of all ages for developing new drugs.  I have the website to sign Grayson up.
  • There is a difference between anti-epilepsy and anti-seizure treatments.  Most of what we already do is anti-seizure.  Take the drugs away and the seizures return.  Doctors are starting to look at how to actually eliminate epilepsy and are drawn to the idea that inflammation of the brain is somehow responsible.  These are true anti-epileptic treatments.

The food was fine, the table company interesting, the speakers knew their audience, and I came away with more information in an evening than I feel I have ever gotten after 8 years of meeting with doctors.  So much to know and understand.  (and as a bonus, many of these cool doctors and scientists speaking to us are women!  Science Rocks!)

After the session, I met up with my son who was at a teen session.  He smiled. He wouldn’t say too much, but he did run into one friend from camp and made a new friend from Chicago.   I greeted some adults I knew from Cincinnati as well.  I met a cool doctor who treated a friend of mine from Anchorage and sent that doctor her greetings.  I went to bed smiling.  Perhaps it is the weather, or that I am in the right frame of mind, or perhaps I am realizing how long I have been hungering for companions in the struggle, knowledge beyond the meager crumbs my doctor gives out, and the confusing information available on the web.  We have a day of education left and then a day spent walking all over the capitol and meeting with Indiana legislatures.  Please email me if you are interested in any more of my amateur lobbying adventures.



  1. Thanks for sharing news of this great experience. I cannot imagine a better parent representative to articulate concerns, represent a community, and spread the word than you. (And although it isn't "Washington" per se, I'm glad to hear that something constructive was accomplished there!) MKP

  2. Amy, It is so good to hear you sounding hopeful and supported. You are an awesome parent and I know you will find the right path for Grayson.