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!
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?
Is mise le meas,
Peter & Maggie
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.
Thursday, May 11, 2017
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!
Thank You for Attending!
This event was held October 1, 2015. Renown Seattle Chef Tom Douglas headlined this Sensational Dining in the Dark experience, designed to help raise awareness about Usher Syndrome, the leading cause of deafblindness. Many thanks to those who attended and helped make it such a memorable evening. More info to follow!
Couldn’t attend but still want to donate? Click on the button below!
Restoring Vision Loss Caused by Usher Syndrome
It is estimated that between 30,000 and 50,000 people in the United States suffer from Usher syndrome, a genetic disorder that causes deafness and blindness. Children with Usher syndrome are born with, or may develop, hearing loss. Then, as these children get older, they develop night blindness and their visual field narrows, creating “tunnel vision.” There are currently no treatments for Usher syndrome, but stem cell therapy holds great promise for restoring sight and benefiting patients worldwide.
The UW Medicine Eye Institute, the only academic Eye Institute in the five-state WWAMI region (Washington, Wyoming, Alaska, Montana and Idaho), is at the frontier of developing new techniques to restore vision loss utilizing stem cell therapy. Building on a depth of research expertise, clinicians and scientists at our institute have partnered with the Hear See Hope Foundation to develop treatments for vision loss caused by Usher syndrome. We welcome your partnership to advance this innovative research.
Advancing Stem Cell Therapy
Jennifer Chao, M.D., Ph.D., assistant professor in UW Medicine’s Department of Ophthalmology, utilizes a special technique to create undifferentiated stem cells from a patient’s own skin or blood cells. These stem cells, called induced pluripotent stem cells (iPSCs), contain a person’s entire genome and can be programmed to become almost any other cell in the body. Dr. Chao, in collaboration with Tom Reh, Ph.D., professor in the Department of Biological Structure, converts these iPSCs into retinal cells that are genetically identical to those found in the patient’s eye. Once the iPSCs have been grown into millions of copies of patient-specific retinal cells, high-throughput screening technology tests thousands of compounds on the cells in an effort to determine which of these compounds help the cells to survive. This process, called “cell rescue,” is a groundbreaking technique that could help identify already FDA-approved drugs capable of stopping or slowing the progression of vision loss in patients with Usher syndrome or other retinal degenerative diseases. While animal models exist for many other degenerative retinal diseases, this is not the case for Usher syndrome. This means that traditional basic research techniques used to test hypotheses in animal models cannot be performed for Usher syndrome. However, new techniques are being developed at UW Medicine to produce improved patient-derived cell culture models of Usher syndrome and other degenerative diseases to accelerate research. With UW Medicine’s streamlined approach, and our strong partnership with the Hear See Hope Foundation, we believe an effective cure will soon be made available to patients.
The Potential of Cell Rescue — From Concept to Cure
In 2013, the Chao Lab performed the first high-throughput screening of stem cells from patients with age-related macular degeneration (AMD). This proof-of-concept study demonstrated promising results: multiple compounds were found to have therapeutic effects, facilitating cell rescue. We are now in the process of understanding the biological mechanisms of the cell rescue, as well as the dosing of potential therapeutic compounds. In 2015, with support from the Hear See Hope Foundation, the UW Medicine Eye Institute will begin using this same method to test stem cells derived from Usher syndrome patients.
Opportunities to Invest
We can accelerate the pace of research aimed at slowing or stopping vision loss in Usher syndrome patients with your philanthropic investment. Support of the UW Medicine Eye Institute will advance:
- Research associated with collecting and growing millions of Usher syndrome patient-specific stem cells, as well as use of the high-throughput screening equipment to test potential treatments. $500,000
- New studies of the mechanisms, dosing and bio-availability of potentially therapeutic compounds identified through high-throughput screening. $500,000
- Implementation of advanced imaging technology — available only at UW Medicine — for understanding the retinal degeneration caused by Usher syndrome and assessing the effectiveness of new treatments. $150,000
- Devoted Usher syndrome research support via part-time or full-time post-doctorate fellows. $40,000 to 60,000 per year
By investing in our partnership, you can advance groundbreaking research that will bring hope for a cure to the thousands of children and individuals suffering from Usher syndrome worldwide.
To learn more, please contact Abbey Norris, director for philanthropy at UW Medicine, at 206.221.8274 or firstname.lastname@example.org. Thank you for your interest.