Anchorage Woman Races to Fund Vision Loss Research

Couple is raising money and awareness of rare genetic condition that causes blindness

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By Lauren Maxwell
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Story Created: Mar 19, 2013 at 7:12 PM AKDT

Story Updated: Mar 20, 2013 at 7:07 AM AKDT

ANCHORAGE - It’s hard to imagine what it would be like to lose your vision, especially if it happened slowly and you knew that one day, you’d be blind. But that is the reality for people with a very rare genetic disease that one Anchorage woman is racing to stop.

Jodi McLaughlin is about to go to Hawaii. She and her husband are competing in the Lava Man Triathlon, an event that is extremely popular with Alaska athletes. Both of them have done the race before, but this year they are competing for a cause, raising money with every mile for people who are slowly going blind.

It’s a rare genetic condition that Jodi knows all too well. She’s a carrier for the gene that causes choroideremia, a retinal condition that starts with gradual vision loss and progresses to blindness. Her brother Jeff has the condition and is slowly losing his sight. Jodi’s grandfather also had the condition, and by his fifties, he was blind.

Jodi said both she and her brother had a 50-50 chance of inheriting the gene from their mother, and both of them received it. Yet only men will actually experience vision loss. Jodi’s two young daughters may also carry the gene, but testing on them has not been completed.

One thing giving the family hope is that researchers are making big strides with gene therapy and may even be close to a cure. In the U.K., clinical trials have been going on for a year with very good results, and similar trials are set to start in the U.S. this summer.

Jodi is trying to raise funds and awareness about the condition so that research can continue.
She is directing people who want more information to the Choroidermia Research Website.

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