Guest Blogger Posts

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Tom, a member of our Usher community shares some tips that he has found helpful as an older adult with Usher syndrome type 2a. Please note that these tips may not be applicable for everyone as this is written from the experience of one person.

Kathy Thompson, Board Director of the Coalition, steps out of her comfort zone and goes camping.

Lane, a mother of two children with Usher Syndrome, writes about her experience at the Usher syndrome Coalition Annual Conference. She explains how these conferences have positively affected not just herself but her whole family.

The primary purpose of the Own the Equinox campaign is to raise awareness about Usher syndrome. The second purpose of Own the Equinox is to raise funds for the Usher Syndrome Coalition.

Children with Usher syndrome will be the major beneficiaries of research on Usher syndrome. But where are these children? Nancy O'Donnell, Director of the USH Trust, ponders this question in an upcoming webinar hosted by the National Center on Deaf-Blindness.

Family physician, Annmaree Yee, shares what it was like coming out of the closet with Usher syndrome.

One day Usher syndrome will be no more, our efforts possibly celebrated but then, eventually, forgotten.

Danay's passion in life is to spread awareness of Usher syndrome and advocate for the deafblind community.

It became very clear to Molly at 14 years old that she somehow needed to raise awareness of her condition to educate and inform those around her about how she felt, what she needed and how they could help.

UsherKids Australia was born from hope and the desire to make the journey through diagnosis and treatment easier for the Usher syndrome families that will follow in our path.

Here we are, celebrating the second annual “Own the Equinox” campaign for Usher Syndrome Awareness Day. Carol Brill hopes we do not have too many more of these campaigns.

We are all working together to eradicate Usher syndrome from the face of this earth, and we will win.

Sophia's thoughts on Usher syndrome: "We need to raise awareness, stand united, educate and find some damn cures. I believe through the Own the Equinox campaign we can do that."

We could change things because now we were two: two families in one region with all the same doctors. We had the power of our voice to advocate for all families with kids with Usher syndrome in Australia. And so UsherKids Australia was born.

Life is full of challenges. This is Sarah's. And as we approach Usher Syndrome Awareness Day, reading the stories, learning more, and helping us inspire change is yours.

Diana is owning the equinox in Mexico. "A new journey is just starting, for our challenge and for our cause. There are new opportunities to witness kindness, to learn something, to change our possibilities, to prove ourselves again that we can do more than we believe."

Bettina likes to use the words fighters, surfers and brave to describe children with Usher syndrome. She uses the same words to describe their families. Here's why...

Caroline Brown, Fairbanks Alaska resident and marathoner, passes the marathoning baton to her 6 year old boys for the second Own the Equinox campaign. Galen (with USH 1b) and David will run their own fundraiser with hopes of crushing their mom's performance last year!

How many people have we met and how many stories have we shared, and how many times have we cried together, and laughed together and been able to bond with those in our Usher Family whom we never would have met before?

As with Chloe's experience of parenthood in general, life post-Usher diagnosis has consisted of a series of phases.

In honor of Usher Syndrome Awareness Day on September 17th, Bill Barkeley, deaf-blind adventurer, advocate & storyteller, is hiking the Camino de Santiago - 533 miles from France into Spain.

Ryan Thomason is a husband, father, runner and a nerd with Usher syndrome Type 2. He describes how his life has changed over the past year because of Usher syndrome.

Nancy Corderman and Kidz b Kidz are giving a face and a voice to Usher syndrome so we can raise awareness and funds.

Clare Weigel describes how on March 22, 2013 everything transformed about her, the way she thought, the way she saw the world, and her perception of herself.

Today Martha along with her guide dog, Alvin, begin a walking and literary journey over the next 26 days for the Usher Syndrome Coalition’s “Own the Equinox” campaign.

Moira Shea, the Vice Chair of the Usher Syndrome Coalition, writes about how she came to her "a-ha" moment while living with Usher syndrome.

The key to advancing research into treatments for Usher syndrome is community. Not just a community, but a genetically-diagnosed and accessible community.

Born in Italy, Dario Sorgato was diagnosed with Usher syndrome type II at the age of 16. Dario describes his passion for travel and adventure and some tips he has collected along the way.

Experiences of a Young Clueless Boy: A little brother's view of Usher syndrome.

Meet Nancy O'Donnell, the new Director of the Usher Syndrome Coalition's International Registry. Nancy looks forward to meeting YOU, the experts with Usher syndrome around the world.

A research group in Valencia, Spain is investigating new therapeutic approaches for Usher syndrome, including the potential impact of vitamins and antioxidants to reduce the progression of the disease.

Moira Shea has Usher syndrome 2A, wears hearing aids and is totally blind. She also has a rock star guide dog named Finnegan.

Licensed genetic counselors Andrea Oza and Danielle Azzariti provide a glimpse of the inner workings of a genetics laboratory and the value of sharing information within the research community.

In the first of our Guest Research Blog Series, we hear from Dr. Gwenaëlle Géléoc who is working to restore hearing in a mouse model of Usher syndrome that would otherwise be deaf. "My hope is that successes in the lab will one day be translated into treatments for Usher patients."

Kerry Thompson shares her story about the challenges she has faced living with Usher syndrome, and how her family has played an essential role in her success.

Diana lives in Mexico City and has Usher syndrome type II. She has become an active member in the Usher community and aspires to do so much more for others with Usher syndrome, both globally and locally.

Collin helped create, an organization working to raise awareness and fund treatments in Holland. Collin also has Usher syndrome type 2a.

Ramona Rice has a strong desire to make a difference as a proud "Usher Chick" and feels genuinely blessed to be one of Usher Syndrome Coalition's members.

Brian Switzer has a deep love for running. He also has Usher syndrome. That won't stop him from running one of the world's most difficult marathon courses on Usher Syndrome Awareness Day.

Caroline Kaczor describes her unique connection to Usher syndrome and her best friend, Rebecca Alexander.

Rebecca Alexander reflects on her path towards self-acceptance. "Having Usher syndrome humbles me not just every day but often every hour and sometimes even by the minute."

On Saturday, September 19th, in honor of Usher Syndrome Awareness Day, the Rose Family will walk together in hope – because we do have much to hope for.

Dominique is working to create an Austrian Usher Community, connecting it to the worldwide Usher Family and to international experts of Usher syndrome. To her, raising awareness means giving hope to people with Usher syndrome and their families.

Lorne Marin describes how he deals with his diagnosis on a daily basis and his climb to raise awareness for Usher syndrome: “I don’t always like climbing. I always like having climbed.”

Danay shares how she has handled her diagnosis and how she endeavors to raise awareness for Usher syndrome from Brandon, Mississippi.

Markku from Finland wants to spread awareness of Usher syndrome and tell the world that a person with Usher can manage fine in life.

Anne Jalakas is a journalist at the National Resource Centre for Deafblindness in Sweden. She is helping raise awareness for Usher syndrome and the entire deafblind community.

Ryan Thomason was diagnosed with Usher syndrome when he was 27 years old. On September 19th, the world's first Usher Syndrome Awareness Day, he will run as far as he can in order to Own the Equinox.

Bettina Kastrup Pedersen works with children with Usher syndrome in Denmark. She describes these kids in three words: surfers, fighters and brave.

Rachel Chaikof advocates for change from Cameroon for Usher Syndrome Awareness Day.

In the build up to Usher Syndrome Awareness Day, Chloe is tweeting excerpts from a love letter that she is writing to her daughter, about the hopes and dreams she has for her in spite, because and in the face of Usher syndrome.

Carol Brill refuses to remain invisible as she passionately raises awareness for Usher syndrome and campaigns the Irish government to recognise deafblindness as a unique disability.

Moira Shea can see the treatments coming. They are just ahead of us. Usher syndrome will fade away as our vision for a cure remains strong. So set the challenge for September 19th and own the equinox, when the world goes more into darkness than light. The light will come back.

Since Day 1, Elise and her family have been trying to make Usher syndrome common knowledge.

In honor of Usher Syndrome Awareness Day on 19 September, Molly wants to show the world what our community looks like.

Every day, a person with Usher syndrome faces numerous obstacles. Despite this, Jessica refuses to let anything stop her.

Dave is the father of two children, the youngest has Usher syndrome. The family live in Melbourne, Australia, where Dave will run a marathon on 19 September for Usher Syndrome Awareness Day.

Caroline Brown, Fairbanks resident, marathoner, and most importantly, mom to Galen (5) who has Usher syndrome—provides an initial glimpse into her world of running the Equinox marathon as a fundraiser for Usher syndrome research.

You’re probably familiar with the old expression that “nothing is free, and there’s always a catch.” Fortunately, there are a few shining exceptions to this rule, and the National Deaf-Blind Equipment Distribution Program, also known as iCanConnect, is one of them.

I am 16 years old and have Usher syndrome. I love horseback riding, photography, and agility with my dogs. This week, I am going to Ireland with my dad. I would not be able to go on this trip if it weren't for Usher Syndrome. I am very excited to meet new people and explore Ireland.

While my dad and others speak, I’m taking over the Usher Syndrome Coalition’s Twitter handle, @UsherCoalition. To help raise awareness for Usher syndrome, I’ll be live tweeting the event with the hashtag #USHFAMILY.

Mike Walsh reminisces on his experience speaking on the Family Panel at the 2014 Usher Syndrome Family Conference at Harvard Medical School.

In an inspired moment of bravado, someone you know decided to go undercover and pretend to be blind, white cane and all, at Boston’s annual July 4th celebration, moved to July 3rd due to Hurricane Arthur.

I was lucky to meet Mark, Julia, Bella and Jack Dunning a few years ago in Boston as a result of my mum finding the Usher Syndrome Coalition online.

I was first diagnosed with deafness as an infant and was one of the first 200 children in the U.S. to receive a cochlear implant as part of a clinical trial. How did I get on that short list? My parents stayed on top of the latest research and reached out to numerous professionals. Years later, at the age of 19, I would come to find out that I had a new battle to overcome.

Katherine Lafferty is a certified and licensed genetic counselor in Massachusetts. She is currently a genetic counselor at the Laboratory for Molecular Medicine at Partners HealthCare Personalized Medicine in Cambridge, MA where she and her colleagues work at the forefront of clinical genetic testing in the areas of hearing loss and Usher syndrome. Katherine also provides genetic counseling to patients and families in the Department of Otolaryngology at Boston Children’s Hospital.

From July 10-12th the Harvard Medical School’s Joseph B. Martin Conference will open its doors for the 2014 International Symposium on Usher Syndrome and Family Conference. This means that the world’s leading Usher syndrome experts and researchers will meet face-to-face with the families they work tirelessly to treat.

I don’t live with Usher syndrome. Not really. My husband does, so I’m a bit like a not-so-silent bystander watching and participating in his journey.

A poem by Mani G. Iyer

When I was 15, I was diagnosed with Usher syndrome, the leading cause of deaf-blindness in the United States. Although I’d had hearing aids since kindergarten, and could never see in dark places, it wasn’t until I started to trip over things in broad daylight that my parents became truly concerned.

Testimony of Susie Trotochaud of Georgia

Jessica Chaikof is a teenager with Usher syndrome. She wrote this poem for her high school English class and has graciously allowed us to reprint it here.

Editor's Note: From time to time we invite guest bloggers to share their Usher syndrome stories and insights. Elise Faucheaux is 28 years old and currently lives in Youngsville, Louisiana with her husband Blair and their son 18 month old son Hunter. She writes regularly about her experiences raising a child with Usher on her blog, Angelic Ears and Eyes.

A Poem by Mani G. Iyer

Jennifer and Mark will be back after the holidays. Mani G. Iyer was born and raised in Bombay, India and has lived in the United States since 1985. He is deaf-blind due to Usher Syndrome. He became deaf by the age of 4, night-blind by the age of 12, and now has very little usable vision.

Molly has been a guest blogger on this site in the past and wishes to share more of her experiences. Her past posts have been among the best received on the site.

At this point, since birth I had been hearing impaired. So the eye opticians asked why I was deaf, but we didn't really know, it was just unexpected. So having been at the opticians for the majority of the day, doing lots of tests, with more and more colleagues coming in to have a peek as they were all so curious.

Usher syndrome has several types and each may have degrees of effect; for example, I was born profoundly deaf and at age 29 learned that I had the very early stages of retinitis pigmentosa.