Friday, February 15, 2013

Time=Lives Story of the Week: Derrick and Meredith Day

“I think I’m the same, except I just can’t see.” 
– Derrick Day, 6 years old

Derrick (6) and Meredith’s (4) story came to Time=Lives via the Foundation Fighting Blindness, an organization dedicated to driving research to prevent, treat and cure people affected by retinal degenerative diseases.

Born legally blind, the siblings suffer from a rare inherited eye disease called Leber’s Congenital Amaurosis, a disorder that can also create central nervous system abnormalities.

Seemingly simple tasks for a sight-abled person become difficult hurdles or even impossibilities when disease has robbed someone of their sight. Derrick’s dad dreams of a day when his son will be able to drive a car. “I never thought about Derrick’s not being able to drive,” said his mom. “When we got to the stop sign, he presented the question to me: Mom, how are we going to make that sign braille so that I can drive?”

Whether it’s as simple as experiencing a rainbow, or as complex as driving a car, the only way for kids like Derrick and Meredith to be able to achieve these seemingly insurmountable tasks is to be able to see. “And the only way that we can have them see,” says their mom, “is with research, and by funding scientists to find a cure.”

The good news is that retinal disease science is advancing. For example, just yesterday the Foundation Fighting Blindness reported that the Argus II retinal prosthesis, a device that can restore some vision to people who are blind from advanced retinitis pigmentosa (RP), received U.S. market approval from the Food and Drug Administration (FDA). More than 20 years of research went into the development of Argus II, with early support from the Foundation.

Also, earlier this month The Washington University School of Medicine created an innovative method for treating vision-robbing diseases using genetic reprogramming. And while their research is at an early stage in mice, it has revealed valuable clues about how to potentially save vision in people.

But promising research like Washington University is conducting wouldn’t be possible without federal funding.  And with sequestration – mandatory, across-the-board budget cuts – looming, the researchers who study diseases like Leber’s Congenital Amaurosis and others could face debilitating cuts to their research programs that would, at best, slow innovation and progress, and at worst, cause entire labs to shut down.

Want to know more about sequestration? Visit FasterCuresSequestration Station for facts, forecasts, and ways to add your voice to the fight for funds. Medical research matters, and must be supported. Derrick, Meredith, and millions of others suffering from debilitating diseases are counting on it.

See more stories about the power and promise of medical research, and tell us why medical research matters to you.

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