Retinitis Pigmentosa and Visual Impairment

While Lawrence Penney may have lost his peripheral vision, he doesn’t let that slow him down.

The Canadian resident, now 66, was diagnosed with retinitis pigmentosa (RP) at the age 0f 58. The progressive genetic disease, which causes a breakdown and loss of cells in the retina, leads to vision symptoms like poor night vision and a decline in peripheral vision. His mother and grandfather had the same condition, too.

Because of his visual difficulties, Penney has been unable to drive, leaving cycling as his only form of independent transportation.

Penney began biking at an early age, but the activity didn’t stick. But in the fall of 2012, he decided to give it another shot. He refurbished his old mountain bike and bought an indoor bike trainer to take him through the winter months.

“I took my cycling outdoors in the spring of 2013 and I haven’t looked back since,” Penney said in an email to Bicycling. “I just love cycling. It provides the freedom I miss due to my visual impairment.”

His weekly goal now is to ride a minimum of 100K, which he usually hits in three rides in and out of the local harbors and coves around his home in Conception Harbour.

“Cycling gives me a feeling of strength, health and independence; I intend to keep riding as long as my legs will hold out,” he said.

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In 2012, at the age of 60, he attended a Foundation Fighting Blindness (FFB) Vision Quest Event in St. John’s, Newfoundland and Labrador, and learned about the annual Cycle for Sight (CFS) event in Toronto. CFS is a fundraising event sponsored by the FFB, where riders choose the distance they want to ride—50K, 100K, or 150K—and raise money for their entry.

Penney thought the event was a great way to raise awareness about the disease he suffers from, to raise funds for it as well. He knew he could use his love of cycling to make a difference.

So he began participating in Cycle for Sight in Toronto in 2013. “Many Toronto CFS riders use a tandem bike with a sighted pilot and a blind stoker. It is amazing to see these athletes,” Penney said.

He and his wife, Amy, participated in the CFS events for several of these years and made it a family holiday with their twin boys, Liam and Seamus. Together, they have fund-raised approximately $20,000 for the FFB.

In 2016, Penney was asked to speak at a Vision Quest Event in St. John’s. There, the FFB agreed to help the Penneys bring CFS to St. John’s in 2017. Penney and his wife agreed to cochair the event, which raises awareness and funds to cure blindness.

That first event and the one held again this year have raised over $35,000. Penney said they are slowly building more steam, and hope to grow the event into a significant local cycling event to further the fundraising cause.

“Bringing CFS to St. John’s has encouraged the visually impaired sport and recreation group to invest in some tandem bikes and work with local cycling community to get some blind people more active and try riding,” he said.

Penney plans to keep riding as long as he can—and to continue encouraging others to help the FFB find a cure for future generations.

“I have four sons and three daughters and twelve grandchildren. I hope against all odds that none of them have RP,” Penney said. “It is for them and all of their generation that I support the FFB, and the research funded through this nonprofit organization.”