Choroideremia Fundraising Efforts Continue Despite the Pandemic

Mark Cohen is a 28 year old lawyer who has a rare eye disease called choroideremia. Its genetic, and his grandpa, brother, and cousin were all diagnosed.

He didn’t receive his diagnosis until he was 14, after his parents started to think he might have inherited it too. The disease primarily affects men. It is progressive and leads to total blindness.

Right now, Mark only has difficulty seeing peripherally. But unfortunately that means he isn’t able to drive. He explains how hard it was to lose his drivers license and sense of freedom. But he is hopeful and has gained perspective on his potential future with the disease. This is fully due to the ongoing innovative research he’s witnessed and been a part of.

His sight is constantly monitored, and he’s currently participating in a clinical trial.

The Trial

A lot of Mark’s hope has come from being a participant in this research and seeing the potential of investigative gene therapy firsthand. His cousin participated in an earlier stage and his sight was saved as a result.

This trial is being funded by Fight for Sight. It began in 2008 at Imperial College. The results have been extremely positive. For some patients, deterioration has stopped, and for others sight has actually been restored.

Mark hopes it means he will never face blindness.

He is so grateful for Fight for Sight that he has began raising funds for the organization himself. In total, he’s raised 3,000 pounds. Although he planned to run the London Marathon as another fundraiser, this event has been postponed. Last week he ran 26km for the research instead.

Previously, he had already raised 2,862 pounds for the marathon. The 26km run gave him another 296.

He’s seen firsthand the impact this research can have on an individual. He is hopeful for the same results his cousin experienced for not only himself, but every other choroideremia patient.

You can read more about Mark’s journey here.

You can also donate directly to Mark’s fundraising initiative here.

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