Deborah and EJ at the True Blood s4 premiere
EJ Scott, the partner of True Blood actress Deborah Ann Woll, has Choroideremia. Choroideremia (CHM) is a rare inherited disorder that causes progressive loss of vision and leads to total blindness. At this time, there is no treatment or cure for this disease. Doctors working on a treatment say they are close but need only a couple of million dollars to make a real difference.
EJ is tireless in his efforts to raise funds for the Choroideremia Research Foundation and raise awareness for the disease. Last year EJ ran the Chicago marathon blindfolded because his eyes are very light sensitive.
In 2012 he will take fundraising to a whole new level: EJ will run 12 marathons in 12 cities!
This is EJ’s story:
As you may or may not know I have an eye disease called CHOROIDEREMIA (CHM) which is slowly causing me to go blind. My 6 year old nephew and brother also have this disease and my mother, sister and aunt are all carriers. (my grandfather also had the disease and was blind from it).
Since I found out in 2003 I have been trying to raise awareness and money for a treatment. Through the CHOROIDEREMIA RESEARCH FOUNDATION (CRF).
Last year I ran 2 half marathons and 1 full marathon in Chicago, all blindfolded. I was fortunate to get some local television and print publicity from it and I’m hoping for a lot more from this.
I also raised $14,000 losing 70lbs. All for the CRF.
Starting January 2012 I will be running one marathon a month in a different city each time. All Blindfolded. The goal is to raise an average of $12,000 per marathon ($144,000 all together by the end of 2012/ beginning of 2013.) I am running blindfolded because I am extremely sunlight sensitive and the sun would be very difficult and dangerous on my eyes for long amounts of time.
The first Marathon in January 2012 will be in Arizona!!! I’m already signed up. I am NOT a runner. This stuff is very new and alien to me, so it will be a very big challenge. I’ll need all the support I can get.
Thanks so much everybody.
Here at The Vault we will continue our support for EJ and the Choroideremia Research Foundation. Today we transferred the first donation of $760, raised with an online auction of a portrait signed by Deborah, into EJ’s 12 MARATHONS in 12 CITIES Fund of the CRF and we have some great activities lined up for the future.
How you can support EJ and the battle against Choroideremia
You can donate by check or wire transfer, the required information can be found on The Choroideremia Research Foundation website.
Or donate directly and safely to the Choroideremia Research Foundation by credit card using the PayPal button here below. Donations are tax deductible for US residents.
This PayPal button was provided to the Vault by Cory MacDonald, Executive Director of the Choroideremia Research Foundation.
EJ during his last marathon
