This week, I registered Andrew, Hayden and I for the National Walk for Epilepsy in Washington DC. Honestly, I can’t wait! I think I’ve mentioned this before – knowing me, probably about 600 times in these short two months I’ve been blogging, but we participated in the very first walk in March 2007. It was a much smaller event then, and I was a much different woman with Epilepsy. Very dear friends, the Marshall Family trekked with us to DC from our home on the Eastern Shore of Maryland to participate. Now, 5 surgeries later, here I am and we are flying to the Nation’s Capital to do it again! Don’t get me wrong, I have participated in countless fundraisers for both the National Foundation and the Foundation here in Michigan, but somehow, this one seems different since I began this online adventure!

Alysse, Hayden and Andrew, National Walk for Epilepsy, March 2007

Our family and the Marshalls (minus Daddy, Mike!)...at the National Walk, March 2007

As you dive deep into a certain illness, it seems like the more you do for the cause, the more you want to understand where the money will go. And so, I spent hours this week researching both the National Foundation’s website  http://epilepsyfoundation.org/howtohelp/donations.cfm and the site of my local affiliate here in Michigan http://www.epilepsymichigan.org/template.php?pid=285. I did learn some things. I was trying to answer my own questions. How do they spend the dollars raised at these walks, parties, functions, etc? When we write a check at the end of the year, where do they put the money? Granted non-profits are an open book, but it’s still nice to know where all this money will go.

I want answers to my questions. If so much money is raised, nationwide, why am I not cured? Why can’t all these people with Epilepsy whom I’ve been chatting with online these last couple of months who are telling me how difficult it is to find a job, get viable health insurance, afford their anti-seizure medications, find transportation for themselves get help? Is the money being spent in the right place? I was thinking, perhaps we need something like a patient watch group for some organizations – not to question their intentions and their work, I’m certain it’s all legitimate, but to ensure that we, those of us who live with these illnesses and diseases, understand how the dollars raised are going to help us.

Maybe some of the money raised could be put towards a program to research this idea?