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.

For Allison Libby, a fateful boat trip has been a suitable metaphor for her life’s journey. In January 2005, she and hundreds of other college students were traveling the world on a “Semester at Sea” cruise when their ship got caught in a wicked winter storm and was struck by a 60-foot wave. For a while, it was touch and go as the boat sat dead in the water at a 45-degree angle in turbulent seas. The passengers donned life jackets, readying themselves in case they needed to abandon ship.

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. 

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!

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.

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.

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.

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.

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.

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.”

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

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

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.

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.

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.

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.

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.

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.

"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."

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

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.

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.

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.

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.

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

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.

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.

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.

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

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 successfully managing life in one's community.

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.

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.

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.

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?

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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.

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.

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, 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.

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.

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."

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.

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."

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.

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.

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.

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.

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 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 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."

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.

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.

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.

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.

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.

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.

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

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.

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."

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.

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.

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.

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.

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 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.