Walking on the Via Francigena

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From May 20 through 27, my wife and I will make a pilgrimage to Rome along the Via Francigena. This 10th Century pilgrims’ road stretches from Canterbury, England, all the way to Rome. That’s a long walk by modern standards – about 1,000km through France, Switzerland, and Italy – and would take at least two months to complete! So, we’ll pick the trail up in Bolsena, Italy, and walk about 140km to St. Peter’s Basilica in Rome.

This will be a spiritual journey for us, but it will have an added dimension . . . we are walking for a cure to Usher Syndrome! Inch by inch, we will carefully pick our way over rocks, ford small rivers, and sometimes cross busy roads filled with Italian drivers (maybe the most dangerous aspect!). We will walk for Usher Syndrome. Every step we take on this journey will help us MARCH FORWARD toward a CURE of the most common cause of deaf/blindness in the United States! All your generous donations will go only toward The Hear See Hope Foundation, an organization that is dedicated to raising and giving out funds to research institutions so that the cure for Usher Syndrome could be found. And 100% of your donation will go for research.

For a little bit about ourselves: Maggie and I have been married 32 years. We have four beautiful children who are now adults. Maggie is a retired special education teacher and I’m a retired software developer. And, by the way, I have Usher Syndrome. I was born deaf with profound sensorial hearing loss and experienced adolescent-onset blindness caused by retinitis pigmentosa, a symptom of Usher Syndrome.

Having Usher Syndrome is a lifelong disability that changes our body over time. I entered the world in silence, others experience the isolation more slowly, but we all struggle with hearing loss throughout childhood. Upon reaching adolescence we gradually lose our precious vision. Our peripheral vision becomes gradually more and more narrow, diminishing to only a few degrees. We see you and the rest of the world through a keyhole. We often stumble into people and things. Others are often perplexed and annoyed, because it seems we could see, so they ask why are we bumping into them? We fear darkness. When we step outside, nothing seems to be there except for a hand to hold, or a flashlight to guide our way. We fall more often than not. Staying balanced and walking a straight line pushes our vestibular system to the limits. The hardest part about all of this is losing our ability to communicate with you, our loved ones, and the world around us. Usher Syndrome affects so many!Is mise le meas! Maggie and Peter Devlin in the Pyranee Mountains.

With that said, we begin our journey with the hope that it becomes yours, also, and will make you that much more knowledgeable about Usher Syndrome. Your donations will be tax deductible and you can join us spiritually on our pilgrimage by following our blog at https://thedevlins.wordpress.com to “walk each step with us.” With your help, we hope to make a difference in helping to find a cure for Usher Syndrome. Won’t you help us Walk for a Cure for Usher Syndrome?

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Is mise le meas,

Peter & Maggie

Classical Hands for a Cure

What: A classical piano concert benefitting Usher Syndrome.

Pianist: Kiera Daley

When: April 13, 2017

Where: The Old Rock Schoolhouse, Valdese, NC

For more information about this event or to learn more about the Daley family, please visit this page.

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Sensation 2017

Thursday, May 11, 2017

5:30-9:00 p.m.

Thanks to everyone who attended our 2017 Sensation Dining in the Dark event. It was a blast! Hosted at the Palace Ballroom, famous venue of renown Seattle Chef Tom Douglas, guests were treated to a five-course wine-paired meal while blindfolded. Sensation is designed to help raise awareness about Usher Syndrome, the leading cause of deafblindness.

Couldn’t attend but still want to donate? Click on the button below!

2018: Kilimanjaro Climb for Usher Syndrome

Conner McKittrick, his dad Todd, brother Cole, doctors and staff who work with Conner, board members, and friends, are busy making plans to climb Mt. Kilimanjaro in 2018. The goal is to promote greater awareness of Usher syndrome.

“This is going to be a once-in-a-lifetime experience for all of us,” he says. Conner was diagnosed with Usher syndrome as a child. He will graduate from high school in 2018 with plans to attend college to study genetics.

“Spending this time with the people who have supported and encouraged me these many years – is something I think we’ll all treasure forever,” he adds.

There will be several opportunities to watch the team’s progress via regular video blogs and other social networking updates. The climb is being filmed for a documentary, which will be premiered at an event a few months after it is completed.

If you’re interested in joining us on our journey or want to donate, send an email to info@hearseehope.com.