First up:  How do I pronounce it?

A good question if you are hoping to "Spread the Word"!

try this:  kuh-roy-der-ree-me-ah 

2:  What is Choroideremia?

A rare, inherited disease causing night blindness, constrictions of the visual field, and eventually total blindness.  The actual vision loss is caused by the degeneration of layers of cells essential to sight called the choroid.  The Choroid feeds the photoreceptor cells which convert light into the electrical impulses our brains read and interpret into "sight".  Once the Choroid has degenerated, the photoreceptors begin to fail and degenerate themselves, as a result, vision is lost over time and exposure.

3: How does one get Choroideremia?

Choroideremia is a genetic disease passed down through the generations on the X chromosome.  If you remember from junior high science, women carry two X chromosomes and men carry an X and a Y.  Therefore women may be a carrier of the disease gene without experiencing many symptoms because they have a healthy version of the gene on their other X chromosome.  The male carriers, however, having inherited only the one X chromosome are susceptible. This means that a female carrier, passing on one of her X chromosomes to her children, has a 50/50 chance of passing on the disease gene.  The male carrier passes the disease gene on the X chromosome to their daughters and a healthy Y chromosome to their sons and so can only pass the disease on to their daughters.

4: What treatment is there for Choroideremia?

Scientists have located the Choroideremia gene on the X chromosome and this is chiefly what drives the current research into gene therapy today. They are now able to detect the disease with a simple blood test.  However as of now no treatment or cure has been found.  Low vision aids, counseling and adaptive training programs are available until a cure or treatment can be discovered and implemented. 

And Finally:  How can I get involved?

There are many ways to help further the chances of finding a cure for Choroideremia, and the first is extremely easy.

First: "Spread the Word".  Since Choroideremia is a fairly rare disease it doesn't get the press to inspire generous contributions or wide interest in the medical field. Simply talking about and raising awareness of the presence of this disease can go a long way at this stage. 

Second: You can make a donation through the Foundation Website.

Third: You can become a member, also through the Foundation Website.

Fourth: You can host a fund raising event!  These can be a lot of fun.  Deborah Ann and E.J. as well many of the True Blood fan groups host events all the time. Gather a bunch of your athletic friends and get sponsored to run a marathon, have your band play a show and donate the proceeds, sell your artwork at a fundraising auction like the Foundation's own visually impaired artist H. Eric Hartman the *art-man*.  There are many ways to raise money that can be fun as well as generous. You can also buy a CRF T-shirt on the Foundation Website.  Remember any tiny little bit can go a long way.