Newsletter - Winter 2020
Dear Usher III Initiative Friends,
2020 has been an extraordinarily tumultuous year, fraught with challenges, uncertainty and great instability as a result of COVID-19. But, to the extent that this pandemic has revealed disturbing vulnerabilities and caused pain, anxiety, and tremendous loss, it has also proven the strength of our resilience, demonstrated our profound capacity to overcome obstacles, reinforced our faith in one another, and borne witness to countless acts of compassion, generosity, and kindness.
That so many people have braved this frightening virus with determination, warmth, and creativity, gives me tremendous hope for all we can achieve when we really try. At the Usher III Initiative, this resolute spirit motivated us to set the ambitious target of beginning clinical trials by 2022. As a result of our team’s tireless efforts this year, we now stand poised to initiate phase-1 trials in 12-14 months, pending FDA approval and the fulfillment of remaining preclinical requirements. With adequate funding, we can complete these prerequisites in 2021.
In addition to our scientific accomplishments, we also applied for two major grant opportunities, presented at the annual USH Coalition Connections Week Conference, explored new pharmaceutical partnerships, and established a presence across all social media platforms for the first time. Excitingly, both of our grant applications have qualified for final rounds of review, a testament to our mission’s scientific merit, probability of success, and the critical need for a therapeutic option for a disease where none exists. In collaboration with the talented medical illustrators at Biotic Artlab, we also created a video, linked here, that offers a moving view into the experience of living with USH3.
Befitting this newsletter’s celebration of determination and strength, we are also thrilled to highlight excerpts, below, from our recent interview with Ryan Coleman, a remarkable 30-year-old individual with USH3. Ryan’s thoughtful reflections on his own history with the disease—from diagnosis through the present—offer a vivid window into his experience living with USH3. They also affirm his refusal to let the disease define him. Today, Ryan credits his diagnosis with instilling in him the fierce determination that has enabled him to take control of his life, to find opportunities where others see constraints, and to focus on solutions when faced with problems.
To our dedicated community: thank you for your commitment to our cause and we are so grateful to each and every one of you. We continued to require your support, and we hope that you will consider contributing to us again at this critical juncture.
Please enjoy our interview with Ryan, below, and I look forward to keeping you apprised of our progress in 2021.
Until then, stay safe, stay healthy and have a happy holiday season and New Year!
Cindy Elden
President and Co-founder
Usher III Initiative
LIVING WITH USHER III:
RYAN COLEMAN
Ryan attending a culinary school in Tepoztlán, Mexico
WHO: Ryan Coleman
AGE: 30
WHERE: New York City, NY
FIRST DIAGNOSED: 13
CAREER: INVESTMENT BANKER
HOBBIES: Cooking, Wine Tasting, Mixology
Ryan attending a culinary school in Tepoztlán, Mexico
“NO ONE REALLY IMAGINES THAT A CONDITION THAT TAKES YOUR HEARING AND VISION AWAY COULD ALSO GIVE YOU ANYTHING POSITIVE IN RETURN.”
But when I think about what I gained from this disease, I tend to fall back on the same takeaway: learning to only focus on things I can control
The truth is, I wouldn’t be where I am now without USH3. If I could snap my fingers and fix this now, I would. But if I could go back in time and fix it when I was 13? I’m not so sure. Having to learn such difficult lessons at an early age was really formative. In many ways, it is what drove me to be the person I am, [...] and I’m very happy with most aspects of my life.
That being said, I know how scary and frustrating it can be to navigate this diagnosis, especially if you feel like you don’t have any control. I've learned that sharing your diagnosis with the people around you doesn't make you a burden. It is easy to forget that many people are also finding themselves in this world, and when you ask for help, you are giving them an opportunity to feel good about where they fit into society too.
Being the first to be vulnerable is incredibly powerful, and being willing to do so is incredibly empowering.
*Parts of this text have been edited and condensed for this newsletter
To read the full interview, see the transcript HERE.
Join the Patient Registries:
If you or someone you love has Usher III make sure they are registered on BOTH patient registries. This is critical as we get closer to clinical trials.
LEARN MORE
Get Genotyped:
If you have only been clinically diagnosed it is very important to get confirmation of the specific genetic disease you have. For more information on genotyping, visit the FFB’s Retina Tracker.
LEARN MORE
Host a Fundraiser:
Encourage your friends and family to support a cause that means so much to you and the Usher III community. Consider hosting a wine-tasting or organizing a walk-a-thon! Use your imagination to gather people and raise funding and awareness! We can help you reach out to your community for some fun in the name of USH3!
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