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Your Community » Stories of Hope
In Their Own Words: Carley Colton, 29, Houston, Texas
Carley ColtonCarley Colton had medical school in her sights until she was diagnosed with Stargardt disease. Now, she's still helping others as a teacher and advocate for the Foundation Fighting Blindness in Houston, Texas.
In Their Own Words: Erin Scala, 27, Baldwinsville, New York
Image of Meghan Downing

A triathlete with her sights set on the Paralympic Games of 2016, Erin Scala dreams of the day her vision will be restored but has not let RP get in her way.

In Their Own Words: Jim Bernardin, 27, Chicago, Illinois
Image of Jim Bernardin

The comedy writer and performer, who has Stargardt disease, has become an unexpected source of support for others grappling with vision loss.

In Their Own Words: Jason James “JJ” Ferreira, 3, Manhasset Hills, New York
Image of JJ Ferreria

Since the 3-year-old’s diagnosis with LCA, his parents, Jennifer and Jason, have been focused on giving him a sighted future.

Getting Better All the Time

The story of how the Argus II retinal prosthesis—recently approved by the FDA—shed light on one Englishman’s life after decades of darkness.

In Their Own Words: Meghan Downing, 11, Santa Barbara, California
Image of Meghan Downing How Meghan Downing, an 11-year-old with Stargardt disease, helps support the Foundation while continuing to surf, swim and, yes, play dodge ball.
Accentuating the Positive

Their two children were born legally blind. But Chris and Doug Day are confident that, with the Foundation’s support, their kids will lead fulfilling lives. That’s why they’ve joined thousands of families across the country doing their part to raise awareness and funds.

Man of Steel

One Foundation benefactor, who’s also affected, knows the value of planning ahead.

It Won’t Slow Her Down

Diagnosed last year with Stargardt disease, Gracie Nash is as active as any 7-year-old. Her parents, meanwhile, are encouraged by the great research strides supported by the Foundation.

No Slowing Down

Affected by Usher syndrome, Rachel Weeks has both limited hearing and sight. But that doesn’t keep her from running, swimming and biking competitively – again and again.

Keeping It Personal

When Judy Hauger and her husband, Craig, moved from their long-time home in Sioux Falls, South Dakota to Pebble Creek, an active adult community outside of Phoenix, Arizona, they were looking forward to warmer weather and all the perks sports teams, social clubs, new friends — of living in such a community. They had no idea that their new neighborhood would come to serve a much more personal calling: finding a cure for Usher syndrome, a disease that is robbing their daughter Ashley of her sight and hearing.

Worldwide Vision

Brooke James has had more than a glimpse of what it means to be blind in certain parts of the world. And she can assure you, it’s scary.

Making Memories

The parents of young children affected by retinal diseases walk a fine line – between making the best of a trying situation and preparing for the worst. “He knows that he has it,” Serena Jenkins says of her 8-year-old son, Aidan, who was diagnosed with retinitis pigmentosa, or RP, three years ago. “But we haven’t told him yet that one day he’ll go blind. We just tell him it’s going to get harder and harder to see. Because we don’t want to scare him. He’s so young, you know?”

His Mother’s Son

When it comes to describing Eric Fulton, “gregarious” is a more-than-appropriate adjective for the husband and father of two who, fittingly, is also communications manager at the Bethesda-based Clark Construction Group. “It comes naturally to me,” he says of his ability to mix it up with people. “The cause makes it easier. But, otherwise, I’m pretty outgoing; I like to talk to people. It’s what I do.”

Genetics — the Key to Unlocking Vision-Saving Cures

Karmen Trzupek, a highly-regarded genetic counselor, will join forces with renowned geneticist Dr. Stephen Daiger, to share the ins and outs of genetic testing and what it can mean for families battling inherited eye diseases.

The Ultimate Adventure

Erik Weihenmayer, a blind man who’s reached the top of Mount Everest and the rest of the Seven Summits, will share his stories at VISIONS 2012 and explain why it’s best to embrace, not shun, adversity.

Throwing Them Off-Guard

Most of Bobbi Moore’s career was spent showing people how to improve their appearances. But for the past 10 years, the Florida resident, who will present at VISIONS 2012, has been teaching crime prevention and personal safety.

The View From The Top

It was when his eyesight started to go on him, and he was depressed about not being able to play basketball with his friends, that the then-12-year-old Erik Weihenmayer was introduced to Terry Fox. He was watching, just a couple inches from the screen, the TV show That’s Incredible, which, as its title implies, featured people with exceptional stories. “Terry Fox was a Canadian who had lost his leg to cancer, and he decided that he was going to run across Canada”—to raise money for cancer research, says Erik, now 43. “A couple things struck me about that. One was that this seemed like the opposite of the natural decision a person in his situation was supposed to make. I didn’t know how to phrase it at the time, but instead of retreating, he attacked.”

A Family Affair

Bill Carty was 28, married and had three young children when he went out to play racquetball one day. It had been years since he’d last played, “and I was surprised that, when the ball hit the wall, it would vanish from my vision,” Bill, now 55, recalls. “But I knew, right away, what it meant.”

All in the Family

In her forthright, funny memoir, Check This Box If You Are Blind, Susan Meyers recounts how her family – Foundation members from the start – struggled to come to terms with her brother’s RP diagnosis.

Humor Us

The 36-year-old actor Jon Wellner, best known for his recurring role as toxicologist Henry Andrews in CSI, hasn’t been able to see all that well for a long time. When he was 13, and playing laser tag with friends, he ran into a wall and broke his nose. Recently, rushing to catch a cab outside a Las Vegas hotel, he collided with a glass door, which, thankfully, did not shatter. He trips over curbs, bumps into coffee tables and, occasionally, steps on a dog. Once, after a friend going for popcorn asked Jon to find them seats in a movie theater, Jon ended up in a woman’s lap. “And there’s little you can do to explain yourself in that situation,” he says.

Fundraising Outside the Box

Louie McGee’s parents are constantly amazed by their son. The 11-year-old student is a blur on the soccer field and in the swimming pool, shows his creative side through improv and by making large pieces of pop art from duct tape, conducts science experiments in his basement laboratory and is even a budding author.

The Need for Speed

Whether it’s cheering on his favorite NASCAR driver or leading his team in the Charlotte VisionWalk, 11-year-old Derek Wynne doesn’t let his RP hold him back from enjoying life to the fullest.

Finding Hope for the Future

When they attended their first Foundation chapter meeting, Henry and Sandra Wong found hope and support in dealing with their son Connor’s diagnosis with Stargardt disease. Today they are co-presidents of the San Francisco chapter, and providing that hope and support to others.

Research is What we Need

While getting a routine eye exam in April 2009, Bill Bales received news that changed his life. He was diagnosed with dry age-related macular degeneration (AMD) in his right eye, which he learned was a retinal degenerative disease depriving him of his central vision in that eye. While his left eye still has vision, it does have some development of AMD that could worsen over time. Taken completely by surprise, Bill and his wife Sarah hurried to find retinal specialists that could cure his disease. They were devastated to find that there are virtually no treatments or cures for Bill’s condition.

Such a Special Guy

Fifteen years ago, when he was still in college, Ralph Charles Mora, otherwise known as “R.C.,” knew something was wrong with his vision. “It wouldn’t be strange to put my hand on somebody’s shoulder, for guidance, especially at parties, because otherwise I’d knock into people,” the San Diego-area native recalls. “If my friends felt a hand on the shoulder, they knew it was me. Emily was the same.”

Weathering the Storm

Back in 1987, Damien DelRusso had a tough time sleeping—in part, because he’d just gone through a divorce and was living on his own. But there was another reason.

Committed to Finding a Cure

When Lori and Kevin Marsh’s daughter Megan was nine years old, she started struggling with her vision. Their family eye doctor thought Megan had an eye muscle problem and gave her a prescription for glasses with bifocals, but her vision only got worse. The Marshes took Megan back to the eye doctor and this time the diagnosis was devastating: Megan was going blind.

Scout’s Honor

Eighteen-year-old Rohan Parekh is an Eagle Scout. He hikes, backpacks and camps out. He’ll soon graduate from Clover Hill High School in Midlothian, Virginia, then head off to American University, where he’ll focus on law and public policy. “In D.C., I’ll check out some internships, to see if that’s what I want to stick with,” he says. Rohan’s also a twin. His sister, Radhika, will be at the University of Virginia next year, studying psychology. “She’s really supportive,” Rohan says. “Whenever I need anything, she’s there. And I know that, even when we’re in college, she’ll definitely call and check up on me.”

Choose to Do Something

April Marsaglia’s grandfather suffered from retinitis pigmentosa, an incurable retinal disease that causes progressive vision loss, so when she noticed her son Bryce often tripping over things that seemed to be in plain sight, she decided to take him to see an optometrist. Bryce was four years old at that time. The optometrist noticed that something wasn’t quite right and gave him a prescription for glasses, but never mentioned any problems with his retina.

A Family’s Fight

When Grant Patterson was diagnosed with retinitis pigmentosa (RP) as a young child, it wasn’t much of a surprise. His family was familiar with this vision-robbing disease because his older brother had been diagnosed years before. At that time, doctors told Grant’s family that he and his brother had x-linked RP, meaning his mother was an unaffected carrier of the gene causing their disease.

Champions for the Cause
Almost 20 years ago, Tom and Sharon Wallsten were celebrating their son Peter’s graduation from the University of North Carolina. Peter had been the editor of the school’s newspaper and had a job as a reporter waiting for him at the St. Petersburg Times in Florida. He planned to start his career after traveling in Europe.

A Greater Purpose
Zac Cohen has been a runner nearly all his life. His father, owner of an athletic shoe store and an avid runner himself, always encouraged Zac to run when he was growing up. As early as 11 years old, Zac was competing in local races and discovering a great love for the sport. He always harbored the desire to compete in a triathlon, but never found the motivation to actually train for one.

26.2 Miles: Blind runner completes marathon with goal to raise money for retinal research
Having lived with a serious hearing impairment for most of his life, Ed McDaniel thought he’d been dealt his fair share of challenges. Then, in his twenties, he learned that he had a progressive vision-robbing disease called retinitis pigmentosa that would gradually steal his vision. This combination of hearing and vision loss is a disease referred to as Usher syndrome and Ed’s diagnosis with this condition was devastating for him.

When People Know, They Want to Help
Though several members of Peter Borchardt’s family across five generations have lost vision to retinitis pigmentosa (RP), the disease wasn’t something they openly discussed. “Growing up, my dad didn’t talk about RP much. His father was quiet about it, as well,” says Peter. “They just didn’t want other people to know.”

Meeting the Challenge
More than 20 years ago, Brian Godfrey was diagnosed with Stargardt disease, a progressive condition that was slowly stealing his vision. While his parents were devastated by the news and feared for his future, Brian, just 15-years old at the time, chose not to entertain those thoughts. Being young and still having a significant amount of vision made it easy for him to ignore the prognosis.
Boundless Spirit

Nowhere on the planet will you find a kid with more artistic passion, talent, and energy than Chloe Lanteigne-Morrow.  She’s acting in two productions at her local community theater, and at the same time, performing with a traveling theater company. She studies both classical and Irish music on the violin, and sings in a local honors choir. Perhaps most impressively, she won first place in an Irish dance competition, which qualified her for the 2010 World Irish Open Championships in Dublin, Ireland.

New Faces of the Foundation: Illuminating Evening

You're seated at a table, waiting patiently. Just before your dinner is served, the lights go out and the room fades into complete darkness. A plate of hot food is placed in front of you by someone you can’t see. Do you remember where your fork is?

Speeding the Pace of Research - Meghan O'Connell
As a child, Meghan O’Connell developed a close relationship with her father, who was a stay-at-home dad. “When I was little, I just assumed that was normal, but as I grew older, I realized that actually wasn’t the case,” she recalls. Meghan’s father suffered from visual loss due to retinitis pigmentosa that made it difficult for him to work, drive, use a computer or complete many other day-to-day tasks.

Illuminating Evening: Dining in the Dark Raises Resources and Awareness
You're seated at a table, waiting patiently. Just before your dinner is served, the lights go out and the room fades into complete darkness. A plate of hot food is placed in front of you by someone you can’t see. Do you remember where your fork is?

VisionWalk’s Eight-Year-Old Superstar
Sue and John Koth became involved in the Foundation’s VisionWalk fundraising program to drive research that might save their eight-year-old daughter’s vision. Katlin was diagnosed with retinitis pigmentosa (RP) five years ago, and is now completely nightblind and has lost most of her peripheral vision. More recently, doctors discovered that Katlin has conorenal syndrome, a progressive condition which in addition to causing RP, has brought on kidney disease and abnormal bone development, especially in her legs and hands.

Attitude is Everything
Just a few years after graduating from college, Joan Creviston was diagnosed with retinitis pigmentosa, a disease she learned would slowly steal her vision. “I went to the doctor because I thought I needed glasses,” she recalls. “The doctor very unceremoniously told me, ‘You don’t need glasses. You’re going blind.’” It was initially hard for Joan to accept the diagnosis because she didn’t experience any of the effects that doctors and specialists said would eventually happen. She was still driving, living on her own and working as an interior designer.

Speeding the Pace of Research: Join the Race to Cure Blindness
Foundation members across the country are raising critical funds for retinal disease research by joining the Race to Cure Blindness, a program that enables anyone to turn a racing event into a fundraiser for the Foundation Fighting Blindness.

A Plan of Action: A Family Goes Online to Raise Awareness and Funds
When it came to having kids, Jennifer and Mathew Pletcher had a plan. They wanted two biological children and an adopted child with special needs. According to plan, they had their first biological child, a girl named Arlington, and soon after, began the process of adopting a young boy from China named Cainan who had a cleft palate and lip — a condition that was manageable, but would require several surgeries. The Pletchers even created a blog to keep friends and family up to date on their efforts to bring Cainan to the U.S. and his progress once he arrived.

Searching for Answers, Finding Hope

When Jennifer Stevens’ newborn boy Gavin was just a day old and still in the hospital, her intuition was telling her that something wasn’t quite right. Physically, he looked fine. He had all his fingers and toes, he was breathing well, and results from all of his tests were normal. The doctors said that little Gavin was doing very well. But something kept nagging at Jennifer. Her husband, Troy, chocked it up to the medication she was taking for pain.

Never Walking Alone

After losing his job and his vision, Lee Shayler walked one mile every hour for 42 days straight to raise money for sight-saving research. He and his family brought in more than $15,000. 

Father & Son Bike Across the Country to Fund Retinal Research

Eighteen-year-old James “Bubba” Frigo, Jr., and his father James Frigo, Sr., are completing a country-wide bike ride in support of the Foundation Fighting Blindness. Two years ago, Bubba was diagnosed with retinitis pigmentosa, a disease he learned would slowly steal his vision. Determined to make the most of the sight he has left, Bubba and his father dreamed up a plan to ride their bikes across the country.

Bayonne Rallies Big for Jack Hogan’s Vision

Five-year-old Jack Hogan has stolen the hearts of Bayonne, New Jersey. When his parents, Jeanette and Shawn, formed a VisionWalk team to raise money for research to cure the retinitis pigmentosa that’s stealing his vision, they reached out to their friends and family, but never did they expect the flood of support they got from their local community."

Brian Godfrey: Meeting the Challenge
More than 20 years ago, Brian Godfrey was diagnosed with Stargardt disease, a progressive condition that was slowly stealing his vision. While his parents were devastated by the news and feared for his future, Brian, just 15-years old at the time, chose not to entertain those thoughts. Being young and still having a significant amount of vision made it easy for him to ignore the prognosis.

A Daughter’s Vision for her Dad
As a little girl, Diana Whitlach marveled at her father’s technical talents and skill with his hands. As a specialty locksmith, David was called upon by banks to open safety deposit boxes when people lost theirs key or passed away. He also worked as an electronic technician, testing everything from circuit boards to false teeth.

For Ken Granger, it was all about the Mission
The Foundation Fighting Blindness recently lost an extraordinary friend, volunteer, and supporter. Ken Granger was always driven to make a difference in the world and approached every task and challenge with the utmost enthusiasm and determination. His many accomplishments reflected his unquenchable spirit. Shortly before his death, Ken interviewed for the following story, which ran in the Orange County Dining in the Dark dinner journal:

Up for the Challenge
Tara LotitoTara Lotito has always been a fierce competitor. As a high school freshman, she worked her way onto the varsity gymnastics and swimming teams. Though a tear to her ACL (a major knee ligament) derailed her from those sports during her junior year, she was determined to stay active and made it onto the softball team and cheerleading squad.

Despite Vision Loss, Nico Knows the Way
When Nico Owen was learning to talk, his first word was not “mommy” or “daddy” — it was “ball.” That’s how much the young boy loved athletics, especially tennis. “Nico could hit a tennis ball over the net from the back of the court when he was just five-years old. He had such great natural ability,” says his mom, Alexandra. It seemed that Nico was destined to follow in the footsteps of his father, Winston, who was a tennis pro and the head of notable tennis clubs in California and Florida.

The Mack Family Rallies around Hope
Eleven years ago, Steve and Lisa Mack sat with their three sons in the office of a retinal specialist, who told them their two youngest boys, four-year-old Bobby and two-year-old Danny, were losing their vision to a rare genetic disease called retinitis pigmentosa. The doctor drew downward sloping lines on a white board, illustrating the inevitable rate at which vision would decline for the boys as they grew up.

Moving Mountains

When it comes to fighting blindness, the Foundation’s DENVER Chapter means business.

A Passion for Play-by-Play
Jeremy Kreisberg’s passion has always been sports broadcasting. A devout fan of the New York Mets since he was a young kid, he spent many summer nights listening to the radio play-by-play of the team’s games. He also regularly called into sports radio talk shows to give his analyses and opinions, and earned a reputation with the program hosts for being rather insightful for a young fan. 

Little Man, Big Spirit
When asked about her 11-year-old son, Bjorn, Doria Brooks chuckles proudly and says, “He has a lot going on. Bjorn is mastering jujitsu and working on an acting career. He’s also a real ladies’ man with a great sense of humor.”

Great Things are Possible
Carol Swatko admits that fundraising isn’t easy work. There are letters to write and phone calls to make. There are follow-ups and reminders. And with the challenging economic times, especially in a place like Las Vegas that has been hit hard by the downturn, people aren’t able to give as generously as they have in the past.

A Big Rally for a Friend’s Vision
Over the last four years, Michelle Veloce has worked tirelessly to raise money for research to halt or reverse the retinitis pigmentosa that is aggressively stealing her husband Steven’s vision. She’s asked for and received generous gifts from dozens of friends, colleagues, family, and her employer, Thomson Reuters, in support of the Foundation’s New York City VisionWalk.

Giving Back

Thirteen years ago at the age of 19, Craig Howie decided to compete in his first triathlon. By the time he finished, he was hooked. More than 100 triathlons later, he is still going strong. Some of his greatest accomplishments include competing in eight Iron Man triathlons and making it to the World Championship Iron Man competition in Kona, Hawaii, four times. Craig now trains athletes who want to participate in triathlons, or any endurance event, while still competing in many of his own. His clients are mostly in his hometown of Boulder, Colorado, but he also trains athletes in other states and even overseas.

Honoring a Big Brother’s Heart and Spirit
Andrei Olenicoff loved being a big brother. He was always attentive, caring, and making sure his little sister, Natalia, was having a good time. “When I was four years old, I would get scared at night, and Andrei would sleep next to me in my little twin bed to calm me down,” Natalia recalls. “He loved to tell me stories and make me laugh. He was the best big brother I could have ever asked for.”

Feeling the Love
VisionWalk was new territory for Steve and Carolyn Browne of San Antonio, because it was the türk pornosu first time they had gone public about their daughters, Sarah and Ellen, having combined hearing and vision loss from Usher syndrome. Though they had been ardent supporters of the Foundation since 2001 — Steve is a national trustee — most people in their circles only knew that the girls had hearing impairments.

Finding the Light - One Family’s Journey in Coping with RP
When Joshua Kozak was a toddler, his mom, Helaine, felt like something was just not right with his behavior in some situations. “Going to certain birthday parties made him cling to me even though he knew the children,” she recalls. Since birth, he had a very difficult time going to bed at night. When he did sleep in his own room, he would wake up in the porno hikaye middle of the night and become totally disoriented. He’d bang into the walls or walk into a closet.

Big Strides for Eagle Eyes
Throughout her life, Martha Steele has successfully met most of the challenges of hearing and vision loss caused by Usher syndrome. As a young child with severe hearing impairment, she received special training to read lips and türk pornosu communicate verbally. Hearing aids helped her make the most of what little hearing she had. Martha went on to become an accomplished student, earning an undergraduate degree from the University of Vermont and a master’s degree in public porno izle health from the University of Michigan.

Pursuing her Passion for Pastry
Ever since Sarah Nelinson was a little girl, she knew she wanted to be a chef. “It’s a passion I picked up from my father,” she says. “Ever since I was about five-years old, it’s what I’ve loved to do.”

Fun Along the Way
Barbara Oleynick’s diagnosis of retinitis pigmentosa came out of nowhere; she never suspected she had a vision problem. At the time, Barbara was 35-years old, had just had her second child, Brooke, and was thriving in her work as a physical therapist. türk pornosu The fateful appointment with her eye doctor occurred just two hours before she and her husband, Gary, were scheduled to meet their realtor to sign papers for their new home. “It was such a shock,” Barbara recalls. “I was afraid I wouldn’t be able to work and afford the house. But the doctor said, ‘Buy your home. Live your life.’ He was very adamant. My head was spinning. I wasn’t sure what was going to porno izle happen or what I was going to do, but it was the best advice.”

A Hopeful Vision for a Heroic Brother
Mindy Feldman has boundless love and admiration for her brother, Cliff Aaron. He is a gifted athlete, extraordinarily bright, and a successful attorney. He is the oldest of three kids, so she and her sister, Amy, have always looked up to him. “We saw him as the pioneer growing up,” says Mindy. “Cliff was the first to go to sleep-away camp. He was the first to do everything.”

Through Courage and Compassion, Zori Singh is Flying High
Sixteen-year-old Zori Singh has good reason to feel unlucky. Severe nearsightedness and retinitis pigmentosa have already diminished his vision to 20/100. He has difficulty seeing in the dark, and navigating hills and inclines can be tricky. The prognosis for his vision is not good; it will inevitably keep getting worse unless a treatment is found.

A Determined Family Rises Above RP
Retinitis pigmentosa (RP) is no stranger to Colette Kramer and several generations of her family. The vision-robbing condition can be traced back to her porno hikaye great-grandparents, the Thorners, who emigrated from Russia just before the turn of the 20th century. As a dominant form of RP, the condition has affected approximately sikiş 50 percent of her family members.

The Incredible Fundraising Machine Known as “The Dutterers”
Steve and Dot Dutterer began raising money for the Foundation in 2001 through a Baltimore-based event known as Sail for Sight. As their first foray into fundraising, Steve and Dot did well, bringing in $1,570 from donation requests they türk pornosu made to family and close friends. But little did they know at the time, they were just getting warmed up.

Evan Mittman’s Spirit of Determination
Evan Mittman was a 19-year-old business major at the University of Miami when he was diagnosed with retinitis pigmentosa. It was the last thing he ever imagined would happen. “I went to the eye doctor, because I had trouble reading my test papers and seeing the blackboard,” says Evan. “They saw irregularities in my retina porno hikaye and sent me to retinal specialists. I was told I was going blind and there was nothing that could be done. To me, it seemed like my life was over.”

A Great Friend in the Long Run
When Dan Duffy was on vacation at the beach and türk pornosu felt some irritation underneath his contact lens, he thought he just had a little sand in his eye.  The last thing he imagined was that he had a blinding eye disease.  porno izle But in the next six weeks, Dan lost central vision in one eye, and a few weeks later, the central vision faded in his other eye.

Inspired, Driven and Always Looking Forward
When Tiffany Chartier was 15-years old, her father, Doug, went to the eye doctor because he was having difficulty following the ball while playing tennis and golf. Tiffany decided to go with him to the appointment for moral support. But Tiffany was in for the shock of her life when the doctors asked to examine her eyes as well.

Father and Daughter Share a Vision for a Cure

Growing up, Lisa Lloyd watched her dad go blind from retinitis pigmentosa. She learned that vision loss doesn’t have to limit one’s opportunities as she watched him navigate the world and work successfully as a biochemist, software engineer, and for the last 26 years, a privately practicing attorney. 

Photographer with RP Focuses on Today
A budding photographer who is slowly losing her vision to retinitis pigmentosa might sound like the plot for a tragic story. But Jamie Cook, a student with retinitis pigmentosa at the Maryland Institute College of Art (MICA), isn’t worrying about the future of her eyesight. Rather, she’s enjoying college life, and snapping a lot of photos to capture the light and images of the world around her.  She’s truly living in the present.

It's time for America to "Idolize" Scott MacIntyre

Congratulations Scott!

Thank you to everyone who voted for Scott after his performance last night. Be sure to tune in next Tuesday at 8:00 p.m. EST and cast your vote. With FFB’s support, Scott MacIntyre is destined to be the next American Idol!

Degenerative eye disease may claim woman's sight, but won't take her positive attitude

Lynette Herman stares into the middle distance while listening to a conversation, occasionally offering up information, correcting her husband's memory or erupting with a sharp burst of laughter. There is levity in those steel grey eyes, and something else: a malfunction that reaches to the cells lining the back inside wall of the eyes. The mutation of a gene reaching back to at least the turn of the last century.

S'more Than Just Sloppy Joes

Towanda Campers Learn More Valuable Lessons About the Fight Against Blindness

The campers of Camp Towanda in Honesdale, Pennsylvania, are no strangers to FFB and the passion, dedication, and creativity it takes to be successful philanthropists. They raised $10,000 for the Foundation's 2007 New York City VisionWalk, and this summer, were congratulated for their impressive success by Towanda's owner and FFB National Trustee, Mitch Reiter, and his wife, Stephanie.

Sweeter than Honey
Curing Blindness with FFBees

Advances in clinical research were the talk of this year's VISIONS Conference in Washington, D.C., but Judy Kahl's "FFBees" were the buzz.

Judy, who has Usher syndrome (combined hearing and vision loss), came up with the eye-catching jewelry she dubbed "FFBees" to raise money in support of FFB's urgent mission to end blinding retinal degenerative diseases, and many of the attractive FFBee pins could be found on the lapels of VISIONS Conference attendees.

The Kid Parties with a Purpose
Benjamin Wilson planned a fun-filled, action-packed party for his ninth birthday. He invited 40 of his pals to a local gymnasium to ride scooters, run relay races, play ball games, and stuff themselves silly with pizza and cake. As one might imagine, the place really rocked.
Not to be Denied
As a young child, Dale Pollak was told he was going nowhere. Until his vision loss was diagnosed in the fourth grade, his teachers thought he was slow, and told him he had no chance of making anything of himself. "Before they knew I had a vision problem, I was dubbed the dumbest kid in the class," says Dale. "As a young child, I internalized that, which was my biggest problem. I was convinced that I couldn't learn, because I was stupid."
Bill Chatlos: 30 Years of Extraordinary Service and Dedication in the Fight Against Blindness
In the mid 1970s, Bill Chatlos and his wife, Janet, had a tough time getting information about the retinitis pigmentosa that was stealing Bill’s vision. Doctors knew very little about the condition, and researching the Internet wouldn’t become a reality for another 20 years. Bill says that ophthalmologic text books at the library had only a page or two describing RP.
The magic in a little momentum

John Corneille, an attorney from DeKalb, Illinois, with retinitis pigmentosa, admits that until the 2007 Chicago VisionWalk, he hadn’t been much of a donor to the Foundation Fighting Blindness. He did get the FFB newsletter, InFocus, and attended some of the Chicago Chapter meetings and a couple of VISIONS Conferences. It was actually John’s wife, Pam, who suggested he put together a team for the 2007 VisionWalk. And early on in organizing his walk team and fundraising efforts, John wasn’t sure who would donate or how much they would give. “We didn’t know how people would respond or what fundraising goals to set,” he says.

A Commanding Voice for Cures

Brooke Pernice is not your typical 14-year-old girl. A blossoming country and western singer, she’s released a CD, “Help from Above,” and sung the national anthem before Major League Baseball games in Los Angeles and San Diego. She has strong faith, patriotism, and is also a remarkable history buff. She soaks up information about World War II like a seasoned historian, even quoting the likes of Winston Churchill. If that wasn’t enough, she happens to be the daughter of Tom Pernice, Jr. – a golfer on the PGA Tour.

My Two Sons: A Family Fights to Save Their Sons’ Vision and Hearing

Yogi and Frank Trainor learned their two sons had Usher syndrome — a genetic condition that was stealing their vision and hearing — when the boys were just going into grade school. The news came as a complete shock. Yogi recalls, “It was devastating. First they needed hearing aids. Now they were losing their vision? I told my husband that unless we find a cure, these boys are going to go blind. This was almost 25 years ago when the disease was not well understood.”

The Art of Perseverance

Renowned portrait artist stands up to the one-two punch of Usher syndrome

Good Teacher

Employee Spotlight on Anne Arella, Director of Development, Southern Region (Raleigh, North Carolina)

Kilimanjaro? Usher Syndrome? No Problem.

A few years ago, Bill Barkeley was sitting in church when he got the idea to climb Mount Kilimanjaro. Located in Tanzania, it’s the world’s largest free-standing mountain, rising more than 19,000 feet. It’s a 45-mile, six-day trek through six eco-systems to the summit.
What’s remarkable about the idea is that Bill wasn’t exactly sure where it came from — maybe he received a message from above, so to speak. He never even had an interest in climbing a mountain. But most remarkably, Bill has Usher syndrome, which has robbed him of much of his hearing and vision, making the endeavor incredibly formidable.

Duty, Service, and Vision

When Fred Scheer left the University of Georgia to enlist in the Army during World War II, he knew he would likely see combat, and that there was a good chance he could get wounded, captured, or worse. Regardless, Fred felt it was his duty to serve his country and take those risks.

A Family of Purpose and Ambition

Usher syndrome has never deterred the Stone family. Of course, it wasn’t easy when Evan and Jill Stone’s two children, Adam and Liz, were born profoundly deaf. And the news later on that their kids were experiencing vision loss from retinitis pigmentosa made things even tougher. But Usher syndrome never got in the way of Adam’s and Liz’s pursuit of what they wanted out of life. If anything, it made them bolder and desire even more.

In a Decades-long Struggle, the Hajjars Face Usher Syndrome with an Unbreakable Bond

When Toufic and Linda Hajjar married in 1948,very little was known about Usher syndrome, a devastating genetic condition that caused three of their five children to be born profoundly deaf and progressively lose much of their vision. Virtually nothing was happening in the way of Usher syndrome research at the time. The Foundation Fighting Blindness would not come into existence for another 23 years. But as a close-knit and determined family, the Hajjars did everything they could to help their children live happily and successfully.

That's What Friends Are For

Donna Burke Tehaan is a good friend. She enjoys sporting events, movies and the theater, dining out, a game of Mah Jongg with the girls, and even a little clothes shopping every now and then. She likes family and social occasions, and quickly warms up to new acquaintances.

If you happen to be a person with a retinal degenerative disease hoping for a cure, Donna is an especially good friend, even if you never get a chance to meet her. In her first year as a Northern Virginia/DC Metro VisionWalk Co-Chair, she has single-handedly raised almost $50,000 to fund research for treatments and cures. With that kind of fundraising success, Donna could hold her own walk.

Ears That Read and Edit

At 73, my self-image had vanished. Who was this newly blinded (RP) me? How was this stranger to get me back into fulfilling life? Doubts were many. During sighted years as a business journal editor, my focus was on professional advancements and appreciable remuneration's. All was changed now ... Forced into retirement, survival became my new focus.

Living with Macular Degeneration - The Kelly Family

"I was a wreck when I left the doctor," says Janet, "my heart was aching for my little boy. When I learned that the disease is inherited, somehow I felt responsible."

Macular Degeneration - Beatrice Mayer

Beatrice Cummings Mayer has always been a woman of vision with a wealth of accomplishments.

Jim Dickson - Sailing For Sight

Jim, who has been blind from retinitis pigmentosa since age seven, worked hard to prepare for his voyage, outfitting his 36 foot sloop, "Eye Opener," with special equipment-a radar system that warns him when other boats are near, and a satellite computer navigation system that reads signals and relays his position using an artificial voice. Jim also used less technologically sophisticated aides such as stitching a pattern into the mast rope to gauge specific lengths and marking his boat in numerous other ways.

Linda Lechner: A Mother Helping a Mission

Can you imagine that selling cookies from your basement could help The Foundation Fighting Blindness (FFB) speed the pace of research? Well Linda Lechner of Indiana, has done just that, and her on-going efforts are reaping impressive results.

A Strong Sense of Vision

San Francisco Mayor Willie Brown is no stranger to challenging circumstances. Born into a very poor family in a small, racially segregated Texas town, Mayor Brown earned his first dollar as a shoe-shine boy. Throughout high school he worked as a janitor, a crop harvester and a messenger. Upon graduation, he moved to San Francisco, bringing with him little more than a cardboard suitcase and his dreams. He diligently worked his way through college and graduated from San Francisco State University and from the Hastings College of Law. Brown was admitted to the California State Bar and worked hard to build a booming law practice during the turbulent times of the early sixties.

Making a Lasting Impression

It was a crystal clear day and Charlotte Isen was enjoying one of her favorite pastimes-golf. As she chipped up to the 14th green, she was alarmed by what she saw. Her ball was suddenly transformed into two rolling eggs and two flags appeared on the green instead of one.

FFB Presents Dr. Weng Tao with Trustee Award

Each year, the Trustees of The Foundation Fighting Blindness recognize a scientist who has made a significant research contribution to fulfilling FFB's mission.

FFB Long Island Affiliate Named Non-Profit of the Year

Considered the 'Academy Awards' of Business for the region, The Chamber of Commerce Regional Business Partnership's Business of the Year Award of Excellence is presented to businesses who have dedicated their efforts to achieving remarkable success, improving our quality of life and contributing to the overall economic development of the region - regardless of their size or location or membership within The Chamber. According to the Chamber, as non-competitive category, the selection committee each year identifies one organization that has positively impacted our region. This is always one of the most difficult categories because all non profits are so deserving.

Living with Macular Degeneration

Catharine and I worked together to identify her strengths and needs and to establish and prioritize her goals. She had difficulty operating household appliances such as her washer, dryer, thermostat and microwave. Markings that she could see and feel were placed on the preferred settings of her appliances. She was able to read a low vision watch to aid in timekeeping.

How Dog Genes May Help the Blind See

Long before Shadow the poodle attained fame for becoming the first dog to be genetically mapped, a shaggy briard named Lancelot had already been shaking paws with lawmakers in Washington.

Since 2001, Lancelot has been a living model of how vision can be restored to the blind, and the gene therapy treatment that gave the briard sight is currently being vetted for human trials. But now that scientists have Shadow's mapped genome as a tool for finding new genes, there may be more medical miracles like Lancelot to come.

The Benefits of Early Introduction to Low Vision Rehabilitation Services

When faced with a loss or impairment, individuals experience a variety of emotions. 

Early Literacy and the Child with Low Vision: What Parents Should Know

Why do we read? Some people say they read for instruction. Others say for enlightenment, entertainment, or stimulation. Whatever the reason, reading is a fundamental activity in most populations and a requirement for türk pornosu successfully managing life in one's community.

Visionary Gift

When you first meet Seattle residents Bob and Lupe Reinstma, you are struck by their warmth and down-to-earth nature. Bob, a long-time supporter of FFB, was diagnosed with retinitis pigmentosa (RP) 60 years ago and has been completely blind for 40 years. A number of his family members-a brother, several cousins and uncles-also faced the challenges of living with RP. Bob now suspects that two of his great grandsons may have the disease. But despite his RP, Bob has never let his visual impairment stand in his way. And while Bob may have lost his sight, his actions tell you that he is certainly a man of vision.

Kids Making a Difference One Cup at a Time

It is a familiar cry around thousands of neighborhoods across America every summer.In the "old" days you may have heard "lemonade for sale...ten cents a whole glass, five cents a half a glass."

While inflation may have changed the price of the sweet, thirst-quenching beverage, many kids and parents still use the lemonade stand as a great way for children to understand the general principals of earning a living and the responsibility of running a business. But some very special kids in Highland Park, Illinois, a suburb outside of Chicago, set up their lemonade stand to do more than just turn a profit. They wanted to help their friend Alan, a eight-year-old boy who is blind from a disease known as Leber congenital amarousis.

My Story

When I was about three, my mother and father noticed that I could not see as others. When it was dark, I always needed a light on and would frequently bump into things when coming inside from bright sunlight.

My parents took me to an ophthalmologist who discovered dark spots on my retina, which were affecting my night vision. I then went to the University of Illinois Eye Clinic. After extensive testing, the ophthalmologist made his diagnosis: a variant form of RP. At this point, my day vision was normal, although it was not known how long that would last. I compensated for my night vision loss by telling people that I was night blind and needed to hold a hand of a fully sighted person in the evening, but I continued my life as if nothing was wrong.

Katie...A Tribute

How do I explain the colors of the rainbow when my child can no longer see? How do I explain an autumn day when the leaves paint a picture on the trees?

Giving Blind Kids a Sporting Chance

Click here to read this story.

Gracious Winner

For Gordon Gund, life is full of trade-offs. Early this year, Gund surprised the sports world when he sold the Cleveland Cavaliers and Gund Arena to Detroit mortgage mogul Dan Gilbert. Who would walk away from a rising team? Twenty-year-old phenom LeBron James was excelling in his second year; All-Star center Zydrunas Ilgauskas was healthy after numerous foot injuries; and fans were flocking to the arena.

Remarkable Insights: Three Young Adults Flourish Despite Fading Eyesight

When she was in the 7th grade, Brooke James was determined to play soccer in the Junior Olympics. "I was so ready to go all the way," she says. But a diagnosis of Stargardt disease, and the progressive loss of her central vision, wiped out her dream of being a soccer champion.

When Jason Soriano was 12 years old, he fell off a 12-foot bunker during a night hike at summer camp. Later that same evening, he stumbled into a campfire. Those fateful missteps werea strongindication thatJason had a problem seeing in the dark. Shortly thereafter, he was diagnosed with retinitis pigmentosa (RP) - a condition which usually begins as night blindness, and often progresses to loss of peripheral vision and blindness.

Little Cousin, Big Hero

I was sitting at the Thanksgiving table talking with my younger cousin, Alan. He was listing all of the presidents, in order, along with their vice presidents, with a huge smile on his face and incessantly laughing. Anyone listening to our conversation would think that he was just another boy. What they wouldn't know is that he is blind, and he is one of the happiest people I know.

Gordon Gund Receives Prestigious Research!America Advocacy Award

Gordon Gund, co-founder and chairman of The Foundation Fighting Blindness, and CEO of Gund Investment Corporation, accepted Research!America's award for Exceptional Contributions as a Volunteer Advocate for Medical and Health Research from The Honorable John Edward Porter (R), Research!America board chair. The award recognizes Gordon's substantial roles as a volunteer leader in advancing research to deliver treatments, preventions and cures for retinal degenerative diseases.

Creating a Lasting Legacy

It was 1971 and Louise and Lanny Boardman were looking for answers after they learned their son, Jim, had Usher syndrome, the leading cause of deaf-blindness in the world. What they found was a group of dedicated volunteers, representing the newly formed RP Foundation (the original name of The Foundation Fighting Blindness), who were also looking for answers when so little was known about retinal degenerative diseases.

Discounts on Makeup Services Help Visually Impaired Women Look Their Best

Just because Patti Pruitt can't see well doesn't mean she doesn't want to look good. "My whole life I've been the kind of person who would never go to the store without my makeup on," she says. "It's just a comfort zone for me. I'm not a vain person - I just want to always look my best."

Maryland Governor's Running Mate Raises Awareness about Stargardt Disease

Kristen Cox, Secretary of Maryland's Department of Disabilities and legally blind from Stargardt disease, has been selected by Maryland Governor Robert Ehrlich as his running mate in his 2006 reelection bid.

Michael Stone prepares for Ironman World Championship, October 21!

When triathlete Michael Stone competes in the grueling Ironman World Championship on October 21 in Kona, Hawaii, he will begin with a 2.4-mile swim, a 112-mile bike ride, and conclude with a 26.2-mile run. Only the most accomplished triathletes are invited to compete in the prestigious Kona event. When asked about the prospects of completing the Kona Ironman or finding a cure for his vision-robbing retinal disease, Stone simply says, "It's not a matter of if, but when."

Meet Loretta Hoffelder

It was 1980 and Loretta Hoffelder was busy running her own business, Semrow Office Service, and enjoying a very active social life due in part to the years her husband served as an Illinois State Senator and Representative.

Go for It - One Man's Approach to Fading Vision

Thomas Wolf never stops. He snowboards, mountain bikes, rollerblades, and skateboards. He's an artist who enjoys photography, acrylics, and creating abstract prints and three-dimensional landscape renderings. He has two master's degrees and works fulltime as an orientation, mobility and rehabilitation specialist at the VA Hospital in Chicago. And later this year, he's getting married. Wolf is doing all this despite being legally blind for the past seven years.

Team Alaska Pride Takes an Adventurous Path to a Cure

Though CB Brady has retinitis pigmentosa, he considers himself fortunate. At the age of 33, he still has some vision left. However, he's very concerned that his two sons may have inherited his potentially blinding disease and their vision loss will be worse. "Maybe my boys won't be so lucky," he says.

A Great Ironman Finish for Michael Stone

It was a glorious day! It started out rather confusing as I had no idea where to place myself in the swim. When swimming with a couple thousand of your most intimate acquaintances it is difficult to know where to place yourself. I have to stay slow as I cannot sight the buoys. Unfortunately I placed mysefl "too" far back. I assumed that since this was Hawaii the swimmers would be faster. I was wrong as I was faster than I gave myself credit. I was stuck in a slow group and had my slowest swim split ever by approximately 6 minutes. Everyone was somewhat slow as the currents were VERY strong, probably due to the earthquake. We also had jelly fish that stung most of us. That was quite the bizarre sensation. I had never done an ocean swim in a race and found it challenging. I just went slow, too slow. I never even raised my heart rate. I was lucky though as approximately 70 people didn't make it out of the swim (from what I am told). I was a bit stunned when they brought in an unconscious athlete while I was changing for the bike. They made me move to make room for this medical emergency.

Sela Cornell - Parents Hopeful About a Cure

Mike and Chrissy Cornell went to the same high school in Chicago but never met until they lived in Breckenridge, Colorado several years later. Mike worked for a non-profit education center often teaching adaptable skiing techniques for paraplegics and the visually impaired. Chrissy was also a ski instructor. They fell in love and after they married, moved to California for work opportunities and excitedly awaited the birth of their first child.

Ellen Cook - It’s All About Doing What You Love

Ellen Cook loved nursing. For more than 20 years, she worked as a registered nurse in obstetrics. Although she sometimes encountered difficult cases, the nursery was usually a joyous place and going to work was a pleasure.

Bob Gatewood - Inspired by New Vision-Saving Treatments

Bob Gatewood is 80 years young. After a busy corporate career that included relocations to Richmond, Los Angeles, and Baltimore, Bob and his wife Sammy have "settled down" in Charlotte, North Carolina. "Life is good," says Bob. "I have a great wife, and I love my new retirement community at Sharon Towers and all of the wonderful people we have met here. There is so much to do that I sometimes joke that I have to retire from my retirement."

Here’s the Guy You Want on Your Team

When Jim Schott was asked to chair the Foundation's VISIONWALK last May in Orlando, he said, "I just have to do this," even though he knew there would be challenges.

What a Relief!

From the Editor: Denice Brown is President of the Greater Philadelphia Chapter of the National Federation of the Blind of Pennsylvania and a National Trustee of the Foundation Fighting Blindness. She has developed a healthy attitude toward the gradual vision loss frequently associated with retinitis pigmentosa. In the following article she describes the process of her evolution.

Driven for Equal Justice

When it comes to social justice, there's no limit to what Shelley Davis will do. She began working for important causes as a young adult with protests against the Vietnam War and campaigns for women's rights. After college, she got involved in ensuring people's access to Social Security benefits. As an attorney, Shelley has helped political activists defend themselves against illegal wiretapping; advocated for the employment rights of people with disabilities; and now serves as Deputy Director of Farmworker Justice, working to improve the health and safety of migrant farmworkers.

Fighting Blindness is a Family Affair for the Cartys

The Cartys know all too well that retinitis pigmentosa (RP) is an inherited disease. The vision-robbing condition has been unusually pervasive across five generations of their family.

Nancy and Steve Mendelow: Partners for a Cure

When Steve and Nancy Mendelow took their wedding vows in 1970, little did they know how much the words "in sickness and in health" would come to play in their marriage.

A Family Reaches Out to Find a Cure for their Son

When Jacob Johnson's mother and father learned that he had X-linked retinitis pigmentosa (XLRP), they kept the news relatively private. Jacob was five when he was diagnosed, and fortunately, he hasn't lost enough vision over the past three years for his friends and other people to notice.

FFB to be Promoted on Nancy Kerrigan’s World of Skating

Figure skating celebrity Nancy Kerrigan is getting the word out on the Foundation's mission to overcome blinding retinal degenerative diseases.

In the Wilson Family, Love and Support Run Both Ways

When Elizabeth Wilson Baker was growing up, doctors knew something wasn't quite right with her eyesight. Her vision was not all that bad - about 20/40 or 20/50 - but glasses couldn't correct it.

Nothing Gets in the Way of FFB’s Richard Faubion

FFB's Richard Faubion is unstoppable. He says, "I was 21 when I was diagnosed with retinitis pigmentosa. That explained all the trouble I had losing baseballs at my feet while playing short stop. My doctor told me that I would be blind in five years. I got a second opinion - same story. My uncle is totally blind from RP and was a great role model, because nothing stopped him. So I just decided that I wouldn't let anything stop me."

Hope for a Little Girl’s Vision

A hospital emergency room brought Bill and Maura Brooks together. He was a fireman-paramedic. She was an ER nurse. Maura was on the other end of the radio when Bill had incoming patients. "She was the first person in the hospital we would make contact with. We began seeing each other socially and things progressed," says Bill. They married in 2005.

Running in the Dark, but Seeing the Light

For most people whorun a marathon, the toughest part of the race is the last few miles when pain and exhaustion test their will and physical limitations.

Race to Cure Blindness, FFB’s New Web-Based Program Makes Team Fundraising a Cinch

For Michael Stone, the 2006 Ironman Triathlon Championship was just the beginning. His completion of the grueling event was not only an important personal accomplishment and an effective fundraiser for FFB, it was the inspiration for establishing a nationwide fundraising program and Web site for athletes called Race to Cure Blindness.

"Race to Cure Blindness is an easy way to get runners, bikers, swimmers and other athletes to raise money for research. So many people who compete are inspired to get behind our cause," says Michael, who is affected by cone-rod dystrophy.

A Ray of Hope for a Sightless Future

In the grocery, Cathy Keller worries as she reaches for her daughter's hand. Feeling below her level of sight, she contacts Christy's head and finds comfort in her touch. Walking out the door at night, she is apprehensive. Her son, Nick, shyly grabs her arm and gently helps her through the dark. Christy is 4 and Nick is 7. They are her guardian angels -- the lights of her life.

Sight-Impaired Clubs Brighten Lives

When Kate Smalley began losing her vision, she was reluctant to tell her friends. They found out, however, while playing a round of golf with her one morning. Smalley carefully aligned her club and smacked a mushroom, blowing it to pieces, while her ball sat untouched a few yards away. "If you couldn't laugh about this, you'd go nuts," she says of aging. "I have a horn out of my ear, telescopic lenses and cane in my hand."

When the Eyes Fail, a Magnifying Device sends a Ray of Light

When Jack Garvey lay down John Grisham's "Partner" before falling asleep several years ago, he had no hint that his novel-reading days were over. But when the letters started floating on the page the next morning, he learned that he had macular degeneration, an irreversible condition that affects more than 10 million Americans 55 and older. Mr. Garvey, who said he was older than 60, and who owns a real estate business here, bought himself a machine that could magnify letters 35 times, but his disease outpaced the machine's ability to help him. Even now, his blue eyes give no hint of trouble as he describes the frustration of not being able to read on his own.

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