The Usher Syndrome Society is incredibly creative and innovative in crafting fundraising campaigns and events that not only raise vital funds but also significantly increase awareness of this rare disorder. Their current campaign, ‘Every Second Counts,’ is a powerful call to action highlighting the challenges faced by people with Usher syndrome with the aim of inspiring hope and accelerating the search for a cure. The Society’s Times Square takeover was brilliant, capturing the world stage and shining a light on Usher syndrome with portraits displayed on 9 billboards in Times Square. In addition the 30-second commercial featuring Rebecca Alexander created an intimate snapshot of life with this condition that certainly educates and inspires viewers.

A mainstream commercial certainly brings awareness to another level. In the commercial Rebecca Alexander asks how you would live your life differently if you knew you were going deaf and blind. That is a stark and thought-provoking question. She is undeniably a fighter and an inspiration to the Usher Syndrome community. Yet, even with her extraordinary accomplishments as an author, psychotherapist, motivational speaker, and extreme athlete, she emphasizes that she can’t do this alone. She has lived her life to the fullest on her terms, has been a relentless disability advocate for herself and others, and at the same time has devoted her time to raising money to further research for treatments or a cure. Her appearances on The Today Show with her brother Peter Alexander, including the most recent one to debut the commercial, have further helped raise awareness and challenge people to do more than just feel good after watching an inspirational story.

I have always been moved by the ‘Shine a Light’ on Usher Syndrome exhibit. The individual portraits evoke so many feelings…strength, resilience, hope, and a strong sense of community. It is a powerful reminder of the human impact of this condition and I hope when others see the faces of Usher syndrome and their story, it inspires them to do everything they can to support the Usher Syndrome Society’s mission. Seeing these faces on billboards in Times Square amplified the message exponentially. For those of us impacted by Usher syndrome, whether directly or indirectly, raising awareness is a constant battle. To see our community represented on such a global stage was truly awe-inspiring.

The slogan “Every Second Counts” has a particular resonance within the Usher Syndrome community due to the specific nature of the condition. While everyone undoubtedly faces their own challenges and urgencies, the progressive nature of the vision component of Usher Syndrome certainly lends a unique weight to the phrase. And while we recognize that each person’s journey is individual and equally deserving of empathy and support, the loss of sight is a profound and often terrifying prospect for most people. While the prospect of vision loss can be daunting for sighted individuals, those living with it demonstrate extraordinary resilience and adaptability. Their experiences underscore the importance of cherishing every moment. As Rebecca says, she cannot control going deaf and blind so she chooses to focus on what she can control; like choosing joy or taking care of her body.

For my husband and me, as parents of two sons with Usher Syndrome Type 1, the phrase “every second counts” has taken on a profound and evolving meaning. Before the diagnosis, it was about getting them hearing aids then cochlear implants to give them access to language. Auditory verbal therapy followed, ensuring they would be successful cochlear implant users. Every second was crucial in providing rich experiences to build vocabulary and knowledge for school success. After the diagnosis, the urgency intensified. As their vision fades, we race against time to fill their lives with visual memories, living each moment to its fullest. Simultaneously, we navigate the challenges of vestibular dysfunction, empowering them through personal training and sports to overcome balance issues and build confidence. Through it all, fostering resilience, joy, and strong mental health becomes an unwavering priority, as every second contributes to their overall well-being.

I’ve always instilled in my sons the importance of embracing their differences, rather than being defined by their disability. This resilience has been inspiring, particularly evident in 2019 when our family was featured in the book, ‘Conversation with Families of Children with Disabilities: Insights for Teacher Understanding.’ A particularly poignant moment arose during the book interview when the author asked if they would change their diagnosis. Their responses were both surprising and deeply moving. Ethan expressed that Usher syndrome has shaped his identity, while Gavin emphasized the profound bond it has created within our family. Their perspectives are a testament to the strength and resilience that can emerge from adversity and living the life you have.

Yet, the reality is that every second matters in the fight against Usher syndrome.  However we may have embraced our life, we still live with the urgency of finding a cure because the relentless progress of this diagnosis casts a long shadow over our lives.  That’s why the Usher Syndrome Society’s “Every Second Counts” campaign is more than just a slogan. With every passing moment, we hope to bring us closer to a future where families like ours won’t have to face this challenge. Accelerating research is the only path to a cure, and that requires support through donations. Every dollar donated fuels groundbreaking studies, brings researchers closer to understanding the intricacies of Usher syndrome, and ultimately, paves the way for life-changing treatments. I urge everyone to join us in this fight by supporting the Usher Syndrome Society and contributing to the vital research that will one day conquer this disease.