But while these parents watch their kids grow and thrive, they wouldn’t choose for them to lose their vision. That’s why each of them supports the Foundation in his or her own way.

The Days, McGees and Nashes represent the millions of families around the world living with the effects of retinal diseases – the same millions we at the Foundation had in mind when developing our annual holiday fundraising campaign, this year known as the “Light the Way to a Cure” campaign. During the month of December, every dollar donated to the Foundation will be matched by an FFB benefactor.

In other words, you donate $35, it’ll be worth $70; $50, it’ll be worth $100, and so on. And these donations will all serve the same purpose – fund the research aimed at treatments and cures for retinal diseases affecting 10 million Americans alone, tens of millions more worldwide.

Meet the Day family. Video courtesy of FFB.

The money, I assure you, will be well-spent. Since it’s founding in 1971, FFB has raised more than $500 million, which has helped researchers identify more than 200 disease-causing genes. It has also facilitated the lab work that’s enabled companies to develop retinal prostheses, gene and cellular therapies and drugs now in clinical, or human, trials – the last step before reaching the marketplace.

Once these treatments – many more of which are in development – become available, millions will be helped, their lives vastly improved by the vision many of us sometimes take for granted. But, when considering a gift, it’s perhaps best to focus on the lives of only a few – Meredith and Derrick Day, for instance. Gracie Nash. Louie McGee.

With that in mind, I’d like to finish this post by asking a question. I encourage you to provide your answer either in the comment section here or on FFB’s Facebook page. In my next post, I’ll share some of those answers. Here it is:

What are you doing to light the way to a cure?

With that in mind, I’d like to share an extraordinary essay written by Colin Krouse, a 15-year-old from Wayne, Pennsylvania, whose 13-year-old brother, Casey, has Stargardt disease.  This fall, the Krouse family participated in the 6^th annual Philadelphia VisionWalk, a 5K fundraiser, and in his essay, Colin shares what it’s like to be the sibling of someone with a retinal disease. He also thanks his brother for reasons you’ll read below:

Four years ago, my family was seated in our living room, watching Sunday night football. It was not an uncommon sight, except something was a bit off. Throughout the night, my parents made comments about my little brother, Casey, who was inching closer and closer to the TV, squinting as if it were the middle of a bright, sunny day. We didn’t think much of it at first, but as this kept occurring, it was obvious that this was something that should probably get checked out.

Casey went through numerous tests and saw a countless number of doctors who all said the same thing – they couldn’t figure out what was wrong. More than two years later, Casey was finally diagnosed with Stargardt disease, which progressively worsens central vision. Imagine a big black dot in the center of each eye that grows larger every day. That’s basically what Stargardt is.

The news didn’t affect me at first, mostly because I didn’t understand what was going on. But, as I became more curious, I began to feel the impact of Casey’s situation. Suddenly, thoughts were flying through my mind. It felt like I had literally lost my best friend. If I had a brother who couldn’t see, who would I play one-on-one baseball with in the backyard? Who would I play video games with? Or ride bikes with down the street to the park?

It was selfish of me, but, initially, I resented my little brother. I was angry, not at him but the situation. It was an anger that could have been soothed by talking to someone, but who was there to talk to? No one was there when I blasted one of his sloppy change-up pitches into the apple tree and trotted around the bases while being pelted with Casey’s glove and shoes. No one was there when, once again, he beat me in basketball, and I threw the ball at him, sending him inside screaming and bragging at the same time. No one was there when we made up after another one of these fights by sneaking freeze-pops and eating them together in the garage.

No one could possibly understand the bond that my brother and I shared, so who could possibly empathize with me? It took a while to realize that the situation was not a burden, but rather a blessing. Over time, as I saw Casey still strike everybody out, best everyone in the classroom and continue to land his patented hook shot over my head, I realized he wasn’t slowing down.

At that point, I began to learn from my little brother. I learned perseverance as I saw him swing at and miss yet another pitch, only to rip one into the gap when it mattered most. I learned courage as, on the basketball court, he took on kids twice his size before nailing a jump shot. I learned determination as he overcame his struggles to read words and see numbers to still get that A-plus.

Best of all, this past summer, I watched Casey – the same kid who had tested as legally blind just a few weeks earlier – pitch a complete game against the number three team in the nation at the Aberdeen, Maryland, baseball complex and send his team of underdogs into the semifinals of the tournament.

I now realize how much I’ve benefited from having Casey in my life. I couldn’t ask for a better little brother, who is still my toughest competitor. I love him more than anyone else in the world, including me. Of course we still have our tiffs, but, at the end of each day, I can’t help but think of how lucky and thankful I am to have him in my life.

– Colin Krouse

Pictured, above: Colin (left) and Casey Krouse at the Philadelphia VisionWalk. 

So, as Rachel began her swim, “I had to dive so deep down mentally to kind of wipe all of that away,” she recalls. “I had to forget what I can’t do and just focus on the physical part.” Which Rachel did, finishing yet another Race to Cure Blindness event that helped her raise funds for FFB.

Rachel’s is one of more than 100 “stories of hope” posted on FFB’s website over the past few years. “Hope” because each is proof that a retinal disease does not end a life; in fact, it may motivate a person in ways those with sight can hardly imagine. But these stories also remind us that vision should never be taken for granted, and that the Foundation’s work inspires our subjects as much as they inspire FFB.

Below are links to six recent stories from our collection, a sampling which illustrates the diverse backgrounds and talents of individuals affected by diseases like retinitis pigmentosa, Stargardt disease and, of course, Usher syndrome:

	“Not To Be Denied” – Struggling in school because of Stargardt disease, Dale Pollak went from being a kid without much of a future to an ultra-successful businessman.
	“Weathering The Storm” – Told, in his teens, that he had retinitis pigmentosa, Damien DelRusso turned to piano tuning to make a living. He ended up cultivating a career in music.
	“The View From The Top” – Although legally blind from birth, Erik Weihenmayer found a way to satisfy his inner athlete – by climbing mountains. He has since scaled the Seven Summits, including Mt. Everest.
	“All In The Family” – Her brother, Andy, was diagnosed with retinitis pigmentosa during the “dark” days, when patients were told there’s no hope. In her memoir, Susan Meyers writes of the challenges many affected families face.
	“Humor Us” – He went to Hollywood to become an actor and discovered along the way that he has retinitis pigmentosa. Now a regular on CSI, Jon Wellner leavens his vision loss with humor.
	“No Slowing Down” – She may have lost much of her vision and hearing to Usher syndrome, but, as a triathlete, Rachel Weeks doesn’t let those deficits stop her.

Richard – who has retinitis pigmentosa (RP) and is the Foundation’s Director of Development, West Region – is among a growing legion of visually impaired people turning to the iPhone for assistive technology. To better understand what sets the device apart from others, I spoke with Richard and two other FFB associates affected by retinal diseases to get the skinny on the iPhone, both pros and cons.

John Corneille, affected with RP, Director of Gift Planning: I really like some apps I found on a website someone recommended. One’s called “money reader.” You point the phone at the currency, and it reads it quickly and accurately. There’s also a GPS system that helps me find places. When I’m riding in a car, it tells me the speed and how much farther we have to go. This helps pass the time if you’re not able to see what’s going on.

With the touch screen, I was used to a tactile keyboard before, so I wasn’t sure about navigation. But it’s really not a problem because VoiceOver [the audible navigation system; see video below] announces where you put your finger and won’t open anything until you double-tap. There is a learning curve; you have to figure out where to tap, slide, that kind of thing. But the more you do it, the better you get.

Richard: It did take me a while to get used to it, but once you learn, it’s pretty easy. And I use the iPhone for lots of things. Aside from email, I use text messages and a calendar feature that sends me invites through email. A double-beep tells me it’s there.

I use reminders a lot. I set the time, and it’ll give me an alert. It has 50 different sounds, to distinguish what’s coming in – crickets for voicemail, a train whistle for text, a tweet for email, my wife’s ring. I like to know who’s calling, what’s happening.

Dean Thompson, affected with Stargardt disease, Managing Partner, Beehive Communications, contractor with FFB: With the iPhone, it’s so much easier to organize email, using the search function I’ve used for a while, only with voice. That includes searching for emails from specific individuals. Once someone sends me something, I can find it easily with audible help, so I move much more quickly.

Siri can be a challenge. If, for instance, I say, “Let me change my phone call from today at 11 to tomorrow at noon,” she might hear it and repeat it back incorrectly – maybe say, “Let me change our phone call heaven.”

But keep in mind, Siri is not voice-activated technology; she’s artificial intelligence. Somewhere along the line, she began to call me by name, literally saying, “Dean, be patient.” She begins to learn you, and you begin to learn her. And since I downloaded iOS6 [the latest version of the Apple operating system], it’s a huge improvement; there are far fewer mistakes. I don’t get better, but she does.

John: I just downloaded iOS6, and I’m hoping that helps with Siri, because it’s been frustrating. Sometimes, she’d act like she was accepting verbal direction, but wouldn’t complete the task. I wasn’t the only one experiencing this. But nothing’s perfect. For me, Siri works 70 percent of the time.

Richard: I laugh sometimes – what Siri says versus what I’ve said. Some words are more difficult for her to understand. But, for me, it’s 85 to 90 percent accurate. The ease of sending a text is what’s great; it’s a matter of talking distinctly, slowly. I’m amazed at how often she gets it right.

The iPhone is revolutionary – having something like this technology. It’s helped me be much more independent and productive. And it wasn’t available even five years ago.

John: For me, it’s a cell phone that provides a lot more features than others. And like any piece of software, it offers stuff I don’t even know about. I need time to figure all of it out. But it is capable of doing just about all I need. It’s like a mini-computer.

Dean: I’ve been able to streamline my business life. But I’m still a lover of the telephone. I’d rather talk. But what blind person wouldn’t?

Photo and video courtesy of Apple, Inc.

I’d bet a fair amount of money, however, that no one’s experienced what I’m about to describe.

I was a partner in a law firm in Illinois for 20 years, beginning in 1986. Back then, I was very much a closet RPer and, therefore, said nothing to those who hired me as a young associate. Deep down, I knew I was hiding something of potential significance, but the fear of being turned down for the job, coupled with denial (and thinking, “It won’t get that bad for me”), guided my thoughts at age 27.

Somehow, I was able to keep the secret until my vision worsened to the point where I had to tell one of my law partners. He was surprised, but not shocked. He’d noticed little signs of poor vision, but because I lived only half a mile from the office, and could “safely” get home after dark, he never sensed the enormity of what I was dealing with. So I continued driving.

I did change my work habits, to try and eliminate risky situations. But when those adjustments weren’t possible, I sought the help of my partner, whom I also considered a friend. And, to this day, I still can’t believe what we did.

I was determined to drive home at night, even in rain and snowstorms, as long as I could see the taillights of the car in front of me. That car was driven by my law partner, who would lead me out of the parking lot and along the half-mile route to my house. I assured him I could make it into my driveway, as it was flanked by reflective markers.

So, picture this: One very intelligent, caring and compassionate lawyer leading the way, in a Mercedes, for his legally blind, 10-years-younger partner, in his Volvo, virtually bumper to bumper through the streets of DeKalb. This lunacy continued for a couple years, even though I knew I was pushing my luck.

But that’s the thing: The fear and anxiety of giving up driving overwhelmed me and consumed much of my rational thought.

Finally, one Friday – July 9, 1999, to be exact – my guide and another partner in the firm came into my office and said, “We need to talk.” I invited them to sit down, and some awkward silence ensued. Then, my senior partner spoke:  “You have to stop driving.”

I said nothing. I remember looking at the floor, resting my forehead on my hand. Finally, I looked up at him and said, “You’re right.” I was at the same time scared and relieved.

Ten minutes later, I called home, and my wife, Pam, answered. At the time, our daughters were ages 11 and 8, and we had not told them about my RP. I asked Pam to come get me at the office and to bring along another driver, so as to pick up my car. I briefly explained to her what had happened at the office, and she began to cry – tears of joy, not sadness.

About 30 minutes later, she and her father came to get me. I haven’t driven since.