Hear See Hope is proud to announce a new partnership with the Usher Syndrome Coalition. The Usher Syndrome Coalition is connecting the global Usher syndrome community. Its mission is to raise awareness and accelerate research for Usher syndrome, the most common genetic cause of combined deafness and blindness. The USC also provides information and support to individuals and families affected by Usher syndrome.
By fostering lasting partnerships with the growing number of
Usher syndrome-focused organizations like Hear See Hope around the world, the USC facilitates collaborative efforts, seeks to minimize duplication of efforts and create a global network of support. Hear See Hope is grateful to the USC and all our supporters who work to find a cure for Usher.
Walking the Camino de Santiago for Usher Syndrome Research
Walking on the Camino de Santiago is a spiritual journey. But for my wife and I, our pilgrimage will have the added dimension of Walking for a Cure. We will be walking for a cure to 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! On June 8, Maggie and I will trek across parts of the ancient Roman trade road, at one time called the “Milky Way”, from St. Jean de Pied, France, to Santiago de Compostella, Spain. We are embarking on the physically demanding journey as a fundraiser for a cure for Usher Syndrome. All of 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. By the time we conclude the trek and fundraising on June 19, we will have walked nearly 200 km!
For a little bit about ourselves. Maggie and I have been married 30 years. We have four children who are now adults. Maggie is a special education teacher and I’m a now retired software developer. I was born deaf with profound sensorial hearing loss and adolescent-onset blindness caused by retinitis pigmentosa. I have 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!
With that being said, we begin the trek with the hope that our journey is yours also, and that it will make you that much more aware about Usher Syndrome. When you make the tax deductible donation, you are spiritually walking with us. Please follow our blog at https://thedevlins.wordpress.com to “walk each step with us”. With your help, we hope to make a big difference toward helping to find the cure to Usher Syndrome.
As Helen Keller said, “Walking with a friend in the dark is better than walking alone in the light.” Won’t you help us Walk for a Cure to Ushers? Won’t you help us Walk for See Hear Hope?
See the Cure! Hear the Cure! Hope for the Cure!
Peter & Maggie