Jacob Rider is a 14-year-old Claremont, New Hampshire, resident affected by an inherited retinal disease called Usher syndrome, which causes both hearing and vision loss. He’s also an energetic high-schooler with energy to spare—which makes him an ideal participant in My Campaign to End Blindness, a personalized fundraising program launched by FFB this past summer.
I recently spoke with Jacob and his mother, Jessica, about Jacob’s life with Usher and the family’s involvement with the Foundation, including the new program. Here’s some of what they said, in their own words:
Diagnosis and Vision
Jacob: I was 6 when I was diagnosed. I was confused because I didn’t know what Usher syndrome was, but it helped me understand why I needed glasses and hearing aids. Since then, my hearing has stayed the same, but my vision has gotten a little worse.
Most of my vision loss is at night. I have to use a flashlight when I walk around outside, even if it’s not that dark. In school, if they don’t turn off the lights, I’m OK. But because I’ve lost some of my peripheral vision, I sometimes trip over things.
My Usher syndrome type, type II, is not as bad as others, so I don’t have as many balance problems. So I’m lucky because I’m able to play sports. I love soccer and track.
Jessica: The hardest part, as a parent, is not knowing a timeline. You can’t nail down when and how much vision he’ll lose. It’s also hard not to know when a treatment or cure will be available.
For a long time, Jacob has worked with an orientation-and-mobility specialist, who’s shown him how to get around in the dark—some different tricks, so he doesn’t walk into things or trip on stairs. Each year, before school starts, they’ll do a walk-through in the building, to find out if there are places that are uneven or dark—just so he can anticipate those things and plan for them.
Getting Involved with FFB
Jessica: I was reading articles on FFB’s website, trying to find out how we could support Jacob, and the research news really gave me hope. I couldn’t find a cure, but I could help raise money for the people who could. So we started a Riders Reach team, where we did an obstacle course each year, raising money for the Foundation.
We sort of branched out this year, having house-party fundraisers. We had a party for handbags and one for jewelry, and raffles. Jacob, of course, helped out—by promoting them on Facebook and reaching out to friends and family. And his younger sister, Ryann, made and sold cupcakes to raise money.
We did all this using the Foundation’s My Campaign to End Blindness website, which has all the tools for Jacob to set up a personal fundraising page. It allows you to cater your fundraising to your own interests. We also plan to keep up with obstacle-course races that way. We have a $5,000 goal for the year, and we’ve raised more than $1,500.
Jacob: I’m not sure about my hearing, but my vision will get worse. I’ll have to probably use a cane. I plan to go to college, and that will be hard with vision loss. But I’m looking forward to it. And I’d like to help FFB out even more, when I’m older—when I can donate more money.
Jessica: We signed on for My Campaign to End Blindness with the future in mind, and for several reasons. One, the actual money you’re raising is going to find treatments and cures for actual vision losses. And all of the research the Foundation supports—the development of many different treatments for many diseases—is very encouraging.
Second, it really brings awareness to particular diseases, like Usher syndrome, that aren’t that well-known. And thirdly, for me personally, it gives hope. Otherwise, we wouldn’t be doing this.
Pictured, above: 14-year-old Jacob Rider, an FFB fundraiser affected by Usher syndrome.