Choroideremia
WHAT IS CHM? CHOROIDEREMIA?: Choroideremia is a rare inherited retinal degenerative disease that causes blindness.
In sufferers of CHM, once the Choroid deteriorates from the lack of an essential protein, the photoreceptors then begin to deteriorate and vision is lost. Starting with the peripheral vision and moving inward until total blindness.
This is genetically passed through families by an x-linked pattern which makes men genetically more susceptible to the disease, experiencing the full range of deterioration, while women “carriers” should experience fewer symptoms.
Dr. Jean Bennett at the University of Pennsylvania is optimistic about a treatment she is developing but she needs 3 million to bring it to trials. A tall order of ra disease with no pharmaceutical support.
Anything you can do to help is greatly appreciated, whether it’s a donation, sponsoring EJ for the marathons or simply spreading the word. Every little bit helps.
GO TO the foundation and donate now: http://choroideremia.org/
EVERY LITTLE BIT HELPS!
You can help EJ raise funds for Choroideremia, just click on the button below.
In the video below, EJ talks about Choroideremia explaining what it is and about his effort to raise funds to find a cure by running 12 Marathons in 12 months in 2012.
Is chorideremia like Tay Sachs? Does it affect a certain ethnic group?
My 19 old lost also has choroideremia … Tommy has been going to the eye doctor every tuesday now for almost 6 weeks . He get shots in his left eye 4 shots and he has to be took up to a iv .We spend 3 hours a week at the eye doctor.The iv that Tommy takes makes him so sick for days then its time for another treament . He has done lost 80% of his left eye ….. thanks Renee & Tommy Scott
EJ, thanks for getting the word out. I was diagnosed in my early teens and now at 42, I just failed my driver license renewal so I’m coming to grips with relinquishing certain things. Seeing your interview on Jeff Probst was reassuring and motivational. Thanks.
My dad has Choroideremia. It’s been really hard on me, he lost all vision when I was about 2 so he doesn’t really know what I look like and it’s just really hard. At the same time though, my dad is amazing! He just has such an amazing spirit about it. I’ve been on many mission trips with him and he’s an inspiration to all! I hope the research helps and hopefully a cure will be found. Thanks for sharing(:
It was great to meet you. I’m very inspired by what you’re doing. I emailed you about trying to help.
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