About Stargardt's

Back in 2000 when I was diagnosed with Stargardt’s I saw  a world-renowned retinal specialist in Boston, MA. He told me there were no treatments and should never expect to see one. With just 20,000 people in the US with Stargardt’s, there wasn’t a big enough population to draw interest from companies and researchers. What he didn’t account for is Foundation Fighting Blindness. Their dedication to understanding and addressing all forms of blindness has led to stunning advances.  We now know what causes Stargardt’s (a defect in the ABCA4 gene), and there isn’t just hope of one treatment, there are dozens in clinical trials right now, and even more in the research phase. 

Your support will make a meaningful difference to the lives of those affected by Stargardt’s and related eye conditions.

Most people with Stargardt’s are diagnosed between the ages of 6 and 10, and the earlier in life one is diagnosed, the worse the prognosis is. Most kids will be fully blind before they’re old enough to drive. While regenerative therapies are in the works, the treatments that are closest to the finish line are ones that halt the progression of Stargardt’s.

The sooner treatments are widely available, the better the outcomes will be for affected kids, and this takes funding. Recalling my doctor’s statement all those years ago, this funding won’t happen through the traditional means, it takes direct support from organizations like Foundation Fighting Blindness, the leading donor to these treatments. 

On November 4, 2009 a state social worker came to my house just outside of Boston, Massachusetts. A week earlier the day I’d been dreading for years had finally arrived, the Massachusetts Commission for the Blind had received a letter from my ophthalmologist. The letter stated that my vision had deteriorated to the point I was considered legally blind.

For the past nine years I’d learned to live with a diagnosis of Stargardt’s Disease, an inherited genetic condition that causes central vision loss. What started as a blurry arch near the center of my visual field had progressed into a donut shape, then the donut filled in and I was no longer able to see what was directly in front of me. It was at this point when my vision hit 20/400 (meaning I need to be 2 feet away to read text that most people can see from 40 feet away), well past the threshold for blindness. The social worker had come to help me adjust to my new status, reviewing with me what services the MCB can offer, different options for “rehabilitation”, and what technologies might help me through the day. He also handed me a collapsible white cane, the universal symbol of blindness, and told me I needed to learn to use it, “to preserve my mobility”.

I’m fortunate enough to work in technology and was (and still am) able to do my job with the help of assistive technologies. The problem I faced then was I no longer had a driver’s license and had no way to get myself to the office – in those days, working remotely wasn’t a realistic option. The state offers a para-transit program, but I was too able-bodied to qualify for the program. My commute was just over three miles each way, and you don’t need a license to ride a bike. So the next day I went out to the garage, dusted off an old hybrid bicycle, and headed off to the office.