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?

Click here to make donate or make a pledge

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.

We hope you can join us at our next Sensational Dining in the Dark experience! Held at the Palace Ballroom, the famous venue of Seattle Chef Tom Douglas, this sensational event will feature a five-course wine-paired meal. Sensation is designed to help raise awareness about Usher Syndrome, the leading cause of deafblindness.

To register, click on the button below.

 

Or you can print, fill out, and mail this registration form,


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

2018: Kilimanjaro Climb for Usher Syndrome

Hear See Hope founder Todd McKittrick, his son Conner McKittrick, and doctors and staff from the UW Medicine Eye Institute, will climb Mt. Kilimanjaro in 2018 to raise funds and awareness for Usher Syndrome. We are in the planning stages and will provide details in the next couple of months. We can tell you that there will be an opportunity for everyone to pledge and participate by watching their progress through regular video blogs. The climb will be documented and premiered at an event a few months after it is completed. So stay tuned!

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

UW Medicine Eye Institute and the Hear See Hope Foundation

Restoring Vision Loss Caused by Usher Syndrome

UWmed

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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

Join Us
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 abbeyn@uw.edu. Thank you for your interest.

Walking the Camino de Santiago for Usher Syndrome Research

Peter and Maggie Devlin
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!

Donate
Buen Camino!

Peter & Maggie

Learning to Live with Usher Syndrome

Connor and Dalton McKittrick are two brothers who are helping each other and learning to live with Usher syndrome.

Lauren’s Quest

This is a story of Lauren and how she helps her friend Conner in the fight against Usher Syndrome.

Canadian Speed Skater Kevin Frost

[youtube]http://www.youtube.com/watch?v=-q8t1FsI8f0[/youtube]
At Hear See Hope, we love to see extraordinary stories about those living with Usher’s syndrome. Meet Canadian speed skater Kevin Frost, who is one of those stories! Kevin has Olympic ambitions and there are only two things in his way — Usher Syndrome and the International Paralympic Committee’s failure to recognize deafblind speed skating as a sport. Kevin’s passion for the speed skating and his drive to succeed have rallied his community around him in support of his bid to get deafblind speed skating recognized as a Paralympic sport and to be one of the first to compete. Watch this video about him, and his efforts to live not just an ordinary life, but an extraordinary one! Visit his website at www.deafblindspeedskater.com for more about Kevin today!

Family Affected by Usher Syndrome

[youtube]http://www.youtube.com/watch?v=uOlwMsxXbzg[/youtube]

The McKittrick family has not one, but two children that are affected by Usher syndrome. Watch this touching story of Dalton, the McKittricks youngest son, as he undergoes surgery to have his cochlear implants put in and gets to hear his parents voice for the first time.