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Choroideremia Research Foundation

Choroideremia Research Foundation

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E.J. 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. But with enough funding clinical trials can be started within the next couple of years.

E.J. has made it his personal mission to raise as much money as possible for the CRF and we will support him in all his efforts.

What has the Choroideremia Research Foundation accomplished so far?

We asked that question to Cory MacDonald, Executive Director of the Choroideremia Research Foundation.

“The word “huge” comes to mind… :) I’ll give you the Reader’s Digest history of CHM research. When we formed 9 1/2 years ago, there was really no research of any significance going on. Doctors who diagnosed kids with CHM at that time were telling parents, “There’s no treatment, there’s no cure, no real research going on, and no hope. Your son will go blind.”

Since our inception, we have funded the creation of the first viable animal model used for Choroideremia research, the CHM mouse. Since that time, the mouse model has been used first for pathology studies to see exactly how CHM progresses in the eye. This gave researchers valuable clues for the next step, which was coming up with a virus vector to be able to deliver a genetic “patch” into the back of the eye. As of this writing, this delivery system is being used on the mice to deliver this patch and things are looking good.

At this point, we are potentially within two short years of human clinical trials to CURE Choroideremia! Yes, we have come this far, and with the proper funding, we can ensure that people like EJ (and me, for that matter) don’t have to lose the rest of their sight!”

 

The Vault has joined E.J.’s team in support of his goal to run 12 marathons in 12 different states of the USA in 2012. You can make credit card donations securely through our action page, so we can all keep track of how much the readers of The Vault have contributed: http://www.crowdrise.com. All the money raised will count for E.J.’s grand total and your comment will also appear on E.J.’s Crowdrise page. Donations are tax deductible for US residents.

 

You can also donate directly and safely to the Choroideremia Research Foundation by credit card or Paypal using the PayPal button here below. Donations are tax deductible for US residents.


This PayPal button was provided to the Vault by Cory MacDonald, Operations Manager of the Choroideremia Research Foundation.

 

For more information about the CRF visit curechm.org
E.J.’s blog http://ejcurechm.blogspot.com/
E.J.’s CRF page on Facebook facebook.com/group.php?gid=30530756158

Total funds raised for the Choroideremia Research Foundation
E.J.’s Losing Weight for a Cure fundraiser $ 1,300
2009 fundraiser $ 2,800
12 marathons in 2012 $ 3,430
2014 fundraiser $ 1,176
Total $ 8,706

 

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