that’s kind of what it’s like when you have Choroideremia. You slowly lose your peripheral vision till you wake up one morning and switching on the lights doesn’t help…your vision is gone forever!!
It’s a disease that’s left EJ Scott with limited sight. He compares it to looking down the length of two paper towel tubes…while my friend Cory MacDonald’s vision loss has progressed even further.
I met Cory a few years ago thanks to the site, 2009 to be exact. It was Alexander’s birthday…I asked him what he wanted me to respond to the fans who were asking me where to send gifts. He replied that he had so much already, he’d rather they donate to a charity. So that started our ambition to not only reach the fans in promotion of Alexander and his projects…we created a venue for the fans to also help out those charities in need.
An article had just been released about Alex’s friend and co-star on True Blood, Debra Ann Woll (Jessica), and her fight to help her boyfriend EJ Scott raise funding for his cause. So with permission from the Tall One, we contacted the Choroideremia Research Foundation and set things in motion.
We didn’t know what we were doing. No other fansites I frequented ran events like this before so it was untouched territory and we had no one to ask for help. Well the guy at CRF was able to steer us in the right direction. Cory, AKA Blind Fury, AKA Jackie Fang…. He enlightened us on some things then, which in turn helped us over the last three years to raise over $100,000 for various charitable fundraisers we took on.
So we come to today…
EJ Scott sent over an email letting us know he’s taken on the INSANE endeavor to raise $144,000 in 2012 in the fight for a cure. 12 marathons in 12 states in 2012…BLINDFOLDED!!! This does not include costs such as airfare, entry fees….etc…etc… A lot of money needed in his quest to save his sight!
That’s what’s special about Choroideremia. It sucks having it…once you do…your sight loss can never be restored BUT…they have discovered a way to stop it in it’s tracks!!!
Choroideremia affects mainly males in a family who carry the gene. Not only is EJ fighting to keep whatever sight he has left…his brother and adorable little nephew have the disease also. Inspiration enough to make him run 12 marathons in 12 states in 12 months…what a lunatic…and hero… 🙂
Usually I’d auction something like this off and it ends up selling for a couple thousand dollars… Enough that a lot of fans complain they can’t afford.
So what I want to try this time is….
You donate to the Choroideremia…ONLY THROUGH OUR BUTTON THE FOUNDATION HAS SET UP FOR US BELOW…you have a chance to win a prize…
I have a few things here other than the script…
A couple mugs…a site designed T-shirt or two…a signed 8×10…a signed magazine…the script…
Cory will keep me up to date daily on how much we’ve earned as a group…
You want to be one of the random winners…all you have to do is donate to the cause!! You want the chance to win the script…donate!!
M. Vanek of Arlington, VA
J. Cool of Partage, MI
K. McMahon of S. Plainfield, NJ
D. Unger of Rossville, IN
M. Dobbs of Albany, NY
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