October 2021 Newsletter
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Missing Pieces
By Alex Anders
I am introduced to wearing a cochlear implant. I throw it out the car window where it gets stuck on a cactus. I am two years old.
I go to a school for the deaf, learn sign language and then how to speak. I make my first best friend. I am four years old.
I have to be in school fifteen minutes early, and leave an hour late because I attend speech therapy. I am eight years old.
I am at science camp, and I cannot touch the plasma ball because it might damage my cochlear implant. I watch all my other classmates touch it. I am ten years old.
I am at the pool, with my implant off, deaf. My friends play around me. I can't hear their voices. I am twelve years old.
I go to the beach, and instead of getting in the water, spend time on the sand with my implant. There is a noise I’m only now aware of, a bubbling roar and murmur. I am fourteen years old.
I’m walking with my friends, and someone shouts. A skateboarder tumbles into me. My friends ask why I didn’t move out of the way. I didn’t hear where he was. I am sixteen years old.
Click here to read more of Alex's story.
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Update on our Research for a Cure
Since our founding in December 2013, our gifted and dedicated research scientists have worked in their labs to advance research for a cure for the vision loss of Usher 1F. We asked some of them to provide our readers with an update on their progress
Click here to read full updates from each of these researchers:
Monte Westerfield, PhD, and Jennifer Phillips, PhD
University of Oregon Institute of Neuroscience
David Corey, PhD
Harvard Medical School
Zubair Ahmed, PhD
University of Maryland School of Medicine
Livia Carvalho, PhD
University of Western Australia
Vincent Tropepe, PhD
University of Toronto
Leah Byrne, PhD
University of Pittsburgh
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Striving to Make Higher Education More Accessible for All
By Jessica Chaikof
Growing up, my parents always told me to never let my disability define or impede me. Even though I am now in my mid-twenties, I continue to live with this motto in everything that I do. As a person living with Usher Syndrome type 1F, I know firsthand the effect Usher 1F has on one’s life. I have had to overcome numerous obstacles—teachers doubting my potential, exclusion from group activities, stereotypes associated with being deaf and visually impaired, and denial of accommodations that are critical to my success. Throughout my academic career, I have had to not only advocate for myself but also for others.
Students at my undergraduate institution embraced being an inclusive and diverse community, accepting of all types of people. Yet the challenge of living with a disability or fostering an environment that promotes accessibility was rarely part of the conversations about diversity. In addition, most students with disabilities do not wish to be publicly identified due to their desire to be accepted within the general student population. Utilizing my advocacy skills, I sought to change the conversation around diversity by emphasizing the ways in which a disability, at times apparent and in some cases hidden, can marginalize many students.
Jessica and her service dog Jigg
Click here to read more about Jessica's work to ensure equal access for all with disabilities
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Read Meat Lovers Club - An Epic "Meeting" for One of Their Own
On September 29, 2021, the Red Meat Lover’s Club, led by Evan Darnell, the Secretary of Steak, along with Ariane and Michael Duarte, held an amazing, enthusiastic fundraiser at Ariane Kitchen & Bar in Verona, NJ, in support of local resident Zachary Root, who has Usher Syndrome type 1F. Guests at the sold-out event were treated to a chef prepared meal by Ariane, which also featured Bagels by Jarret, Gotham Burger Social club by Mike Puma, Honey’s by Carrie Halper and Jola Coffee, followed by both a live and silent auction.
Emily, Rachel, and Jared Root holding Zachary
Zachary’s parents and Usher 1F Collaborative board members, Jared and Rachel Root, spoke, thanking their friends for supporting them in the past by riding bikes, racing through mud, and making a bowl of cereal blindfolded, and now by eating steak. Joining them for the event were Usher 1F Collaborative founders and board members Elliot and Melissa Chaikof.
Thanks to the generosity of the hosts and guests, the epic “meating” raised $30,000 for Usher 1F research!
Red Meat Lovers Club Chefs and Hosts
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Introducing Our New Board Member Josh Cohen
Joshua Cohen is the President and CEO of Pearl Media. With over 20 years of experience in the media and advertising business, Cohen has continually embraced emerging technology to offer clients the latest in innovative communications content. His creativity and dedication has helped create groundbreaking campaigns for Fortune 100 brands, including Disney, GM, Tommy Hilfiger, Verizon, Miller Coors, ESPN, Sports Illustrated and Lexus.
Founding Pearl Media in 2006, Josh’s innovation and experience has grown the company from a traditional outdoor media group to a creative minded and technology driven experiential agency.
Usher 1F Collaborative has been the fortunate recipient of Josh’s skills in the past when he designed posters for our Sight.Sound.Cycle events. We are excited to welcome him to our board.
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Thanks again for your support!
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