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Choroideremia Research Foundation

Choroideremia Research Foundation

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One might ask what the connection is between True Blood and the Choroideremia Research Foundation. The answer simply is E.J. Scott.  EJ is the boyfriend of True Blood actress, Deborah Ann Woll (Jessica Hamby) and he and several of his family members have been diagnosed with Choroideremia.

What is Choroideremia (CHM)?

Choroideremia is a degenerative hereditary eye disease that attacks the peripheral vision and slowly erodes it over time until total blindness.

What is the Treatment for Choroideremia?

Scientists discovered the exact location of the Choroideremia gene on the X chromosome in the early 1990’s. New research based on these findings now drives the search for a treatment. However, at present there is no effective treatment or cure.

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!”

How can I help?

You can help the Choroideremia Research Foundation by supporting EJ Scott’s fundraiser “Losing weight for charity“.

Besides his eye condition EJ has another problem, he is overweight, caused by an unhealthy diet. The idea is to combine the two: lose weight and help his charity. You can sponsor EJ for every pound of weight that he loses and donate that money directly to The Choroideremia Research Foundation by Paypal, check or wire transfer (tax deductible for US residents). No amount is too small. For example if you sponsor EJ for 25c per lb and he reaches his goal of 60 lbs weight loss, your total donation will be $15.

For more information read EJ’s blog “Losing weight for charity and myself” or visit his Facebook page or The Choroideremia Research Foundation website.

How can I donate?

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.

Photo of Deborah and EJ courtesy of EJ Scott.

2 Comment responses

  1. Avatar
    March 09, 2010

    I think your post is great. Losing weight is not easy but when one has the correct information and support it’s much easier. I want to personally thank you for taking your time to write this post. Keep up the good work.

    Reply

  2. Avatar
    April 18, 2010

    Thanks for your help bringing Choroideremia to the front. As the father, and uncle of a few, brother-in-law of young men and children with this condition I pray for a cure soon!

    Reply

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