Full Steam Ahead

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.

But ultimately, the ship regained power, made some adjustments to its original itinerary, and resumed its journey to exotic destinations such as The Great Wall and the Taj Mahal.

For Allison, that nautical misadventure was just one of many big waves that have rocked her life. The first was congenital hearing loss. The second was a diagnosis of vision loss from retinitis pigmentosa (RP) when she was 13. And the third was the recent discovery that Usher syndrome 3 was at the root of her hearing and vision loss, and would continue to rob her of her ability to see and hear.

But Allison, now 24-years old, has continued her life’s journey undeterred by the daunting prognosis that Usher syndrome holds for her. She graduated magna cum laude from the University of California, Los Angeles, and is pursuing a doctorate in clinical psychology from Pacific Graduate School of Psychology-Stanford Consortium. She loves to read, and continues to travel the world.

Understandably, her parents, Bonnie and Jeff, have at times struggled along with their daughter. Bonnie recalls some of the disheartening moments in Allison’s young life: the time when she was 12 and couldn’t see a beautiful meteor shower; the time the pediatrician first noticed something wrong with Allison’s eyes; and the realization that she needed hearing aids. “The time she came to me and told me she needed to stop driving. I cried. She cried. It really hit home,” Bonnie says.

The Libbys became involved with the Foundation Fighting Blindness in the mid 1990s, shortly after Allison was first diagnosed with RP. Jeff created a database of people in Northern California who were affected with retinal degenerative diseases. They helped organize a small chapter and held a few local fundraising walks.

But in 2007, the Bay Area’s Inaugural VisionWalk was an empowering turning point for the Libbys and the local chapter. Becky, Allison’s older sister, co-chaired the walk, and the family together raised thousands of dollars for research. Bonnie co-chaired the walk in 2008, and led another successful fundraising campaign. In two years, the walks have raised more than $200,000. The 2009 San Francisco VisionWalk is scheduled for June 6 at Golden Gate Park.

Bonnie admits that fundraising wasn’t something she looked forward to doing at first, but she’s been surprised and pleased with the response from friends, family, and the community. “Now that the VisionWalk program has really blossomed, we are working as hard as we can. The Internet tools are also very helpful. It’s easier to fundraise. And Golden Gate Park is a very scenic and visible venue,” she says. “I am not great at asking for money, but it is such a worthwhile cause. It’s something important to millions of people, not just for our family. I want to let everybody know.”

The Libbys are very excited about the progress of FFB-funded research in recent years. “The LCA gene therapy trials are really amazing as are the Neurotech studies. Second Sight’s retinal prosthesis is remarkable,” says Bonnie. “The past two years have been the most encouraging since we have been involved with FFB. We are really hoping they come up with something in the next few years before Allison loses too much more vision or hearing. We are optimistic.”