Founded in 1990, the Choroideremia Research Foundation began as a support group for sufferers of the affliction and their loved ones, but soon transformed into an organization also concerned with finding a cure for it. As there are currently no treatments or cures for Choroideremia, the Choroideremia Research Foundation works to educate the general public as well as those who suffer from the affliction; provide support for sufferers of Choroideremia so that they may lead a normal life; and to raise funds for researching treatments and cures.

Choroideremia is a genetic affliction that affects the eye, that in most cases, causes the sufferer to eventually go blind. Currently, there is no cure for Choroideremia. However, in the 1990s, scientists were able to discover the genetic marker for the affliction. Being that it is genetically linked to the X-chromosome, it is usually an affliction that only develops in men. Women are usually only carriers of the affliction and have a 50% chance of passing an X-chromosome afflicted with Choroideremia to their children. Since men carry only one X-chromosome, those who are afflicted with Choroideremia always pass on the affliction to their children.

As her long time boyfriend, EJ Scott, is a sufferer of Choroideremia, Deborah Ann Woll (Jessica on True Blood) is a vocal supporter of the Choroideremia Research Foundation.

In EJ Scott's own words:

In 2003 I was told that I am going blind from a rare degenerative and hereditary eye disease called Choroideremia. I had never heard of it before. I was 27 years old. My brother was told he has it as well. A few years ago we learned my nephew has it. He's 5 now with a 1-year-old brother who also might have it. My grandfather went totally blind in his 40's. My mother, aunt and sister are all carriers. The disease attacks the peripheral vision and over time erodes it until total blindness. Although men are the main sufferers of the disease, there are a handful of known cases where women suffer from the effects as well.

About a year or so ago I learned I have lost enough sight to now be considered legally blind. I have given up driving two years ago and now walk with a cane to help me not bump into things and people so often.

Since 2004 I have been trying to raise money and awareness for the Choroideremia Research Foundation. I've done different comedy show fundraisers as well as taken part in a bicycle trip across the country. I didn't bike but my brother-in-law did. I recorded everything I could about the journey and am working on making it a feature length documentary. I have lost weight (70lbs) and with the help of financial sponsors used the weight loss to raise $14,000 for the Choroideremia Research Foundation. I am now training to do my first ever half and full marathons this year in Chicago, also as fund-raisers for the foundation. I will have to run the marathons blindfolded due to my extreme sensitivity to sunlight, although I will have experienced guides helping me.

Please help in anyway you can. Help by talking with people about this awful disease that is plaguing my family and other families around the world. And donate what you can at www.curechm.org. You can also join the Facebook and MySpace pages I've started by typing in Choroideremia into the search.

Thank you so much for your time and for reading this.

SPREAD THE WORD!!! - CHOROIDEREMIA!!!

EJ Scott

EJ Scott and Deborah Ann Woll