Usher Syndrome Society

The Usher Syndrome Society is a dynamic and impactful organization that goes far beyond simply raising awareness. Their multifaceted approach is truly remarkable and their work is vital. Their innovative campaigns, like the Times Square takeover and the commercial featuring Rebecca Alexander, raise crucial awareness. Seeing the faces of those affected, including my own children, in their "Shine a Light" exhibit and on Times Square billboards, is incredibly moving. Their creativity and innovation in fundraising and awareness campaigns ignite hope and drive real change. From the deeply personal 'Sense Stories' to dynamic events like 'Sight, Strength, and Sound,' they create diverse platforms for connection and understanding. Their 'Conversations with USH' interview series provides invaluable insights, while their dedication to producing docuseries and films brings the experiences to a wider audience, fostering empathy and awareness. The Usher Syndrome Society blog is a platform where anybody connected to the Usher syndrome community can share their story, which helps fundraising efforts and support their mission to find treatments and a cure for all types of Usher Syndrome. What truly sets them apart is their unwavering commitment to funding groundbreaking research. Every dollar donated fuels crucial studies, bringing us closer to treatments. This is organization that is truly making a profound and lasting difference.

I’ve worked with the Usher Syndrome Society for a number of years now, and I couldn’t be more proud to be part of the incredible work they’re doing to raise awareness and research funding for Usher syndrome, a rare disease that most people have never heard of.

My mom, Nancy Corderman, started the organization after two of my siblings were unexpectedly diagnosed with Usher syndrome about ten years ago. I became more involved about five years ago, and it’s been amazing to witness how much the Society has grown and the impact it’s making. From establishing their own scientific advisory board to launching global research grants aimed at finding treatments for all types of Usher syndrome to launching a groundbreaking campaign in 2024 featured on 9 Times Square billboards, the Usher Syndrome Society is truly changing the future for people and families living with this disease.

I’m beyond proud of my mom’s unwavering commitment to finding treatments and a cure for her children (my siblings) and I’m so grateful to everyone who continues to support the USH Society’s awareness and research efforts. The organization is also deeply connected to the USH community, and I’ve been lucky to meet so many amazing people through our events and during the photography sessions for the Shine a Light on Usher Syndrome Global Exhibit. Getting to know these individuals and families and hearing their stories has given me a powerful perspective on what it means to live with resilience, hope, and strength.

I met my best friend in 2005 but I had never heard of Usher Syndrome until she educated me about it. Over 20 years of friendship, I have had the great pleasure of meeting countless people in the Usher Syndrome community, but none have had as much of an impact on me as Nancy Corderman, her family, and the entire team at Usher Syndrom Society. As others have stated already (better than I can), USS is not just about one thing. They represent all the beautiful complexity that exists in this small but mighty community. They tell stories of reslience, strength, grief, determination, setbacks and triumphs. What started out as a "photo exhibition" has evolved into a full spectrum support system that not only tells incredible individual stories but also contributes to important initiatives like an Usher Syndrome summer camp for pre-teens and teens, innovative research collaborations with major hospitals, and global multi-media awareness campaigns. Anyone with an Usher Syndrome diagnosis for themselves or a family member finds a very welcoming home in this community and Usher Syndrome Society is at its heart.

I happen to focus on science and research in my role with USS and I am proud to say that we have thoughtfully and strategically deployed millions of dollars to some of the most innovative research teams and universities in the world. I am proud to know that if a scientist has an idea about a treatment or cure, they know that USS should be the first stop to make their proposal. The team is open minded, thorough, responsive and fair. I have great faith that these grants and efforts will bear fruit in the near future.

The Usher Syndrome Society is a remarkable organization that I have been deeply connected to both personally and professionally. As a board member living with USH2A, and the daughter of the USH Society's amazing founder, I have watched this non-profit grow from a vision into a powerful force for awareness, research, and advocacy.

The heart of the USH Society is its ability to engage people through creative storytelling. Usher syndrome is a rare disease that most people have never heard of (and I certainly hadn't before I was diagnosed!), yet the USH Society finds ways to make it impossible to ignore. By sharing personal stories and using art as a platform for awareness, they have transformed what could have been just another medical cause into something deeply human, emotional, and inspiring.

But the USH Society doesn’t stop at raising awareness - it takes real action. The organization funds critical research, fosters collaboration between scientists and medical institutions, and fights for policy changes that accelerate progress toward a cure. Every initiative is driven by a relentless passion to make a difference.

Being involved with the USH Society has shown me how much impact a determined group of people can have, and I am incredibly proud of what we have accomplished so far. There is still much work to be done, but with the creativity, dedication, and urgency that define this organization, I do not doubt that we are getting closer to a cure.

I have been a volunteer with Usher Syndrome Society since its inception and I continue to be amazed at all this organization has been able to accomplish. Nancy, the founder, has incredible energy, passion and creativity, all of which she brings to each and every component of the society. Her compassion for those living with usher Syndrome and their loved ones is unparalleled and always at the center of every decision she makes.

As a volunteer, I have always been treated with respect and appreciation and though I don't personally have USH, nor do any of my family members, I remain dedicated to this organization largely because of how it is managed. Nearly 100 percent of donations go directly toward research and it has been so inspiring to see how much this relatively small organization has been able to move the needle with regard to finding treatments and a cure.

I plan to continue to support the Society as a volunteer for as long as they need me.

I was diagnosed with Usher Syndrome Type 2A, a disease I had never heard of, at a time I didn't think my life had any limitations. I was in shock, reeling from the news that my vision and hearing would one day be gone. After being in denial for several years, I chose to fight back. With the support of a fellow board member, Sophia Boccard and our founder, Nancy Corderman (who has more passion in her pinky than many of us could dream of having), I joined the Board of the Usher Syndrome Society. With this incredible, talented and determined group, I knew we could move the needle. Not only is the Usher Syndrome Society raising awareness in innovative ways, we are committed to funding research projects that ensure progress is being made. Art gets people's attention, which is what we need... for the world to know we need everyone's help in finding a cure for Usher syndrome.

While we are making great strides, there is much work to be done. This work could move more quickly with government support and funding. The Usher Syndrome Society is also working tirelessly to maintain/add to existing vision loss research funding within the National Institutes of Health, National Eye Institute.

My faith in the Usher Syndrome Society's mission has not once faltered. For as long as it takes, I will continue be a part of this quest for cure. The Usher Syndrome Society fight not only for ourselves and loved ones, but for the 400,000+ people worldwide dealing with the physical and mental challenges of Usher syndrome.

The Usher Syndrome Society (USS) is a truly unique and impactful organization that raises awareness about Usher syndrome through creative storytelling, artistic projects, and powerful advocacy efforts. Unlike other community-focused organizations, USS serves as a platform for individuals affected by Usher syndrome to share their personal stories with the world, helping to humanize the condition and educate the public in a way that is both moving and memorable.

What sets USS apart is its ability to combine awareness, art, and action. They not only create space for storytelling but also fund critical research efforts and raise money to support projects aimed at finding treatments. Their work bridges the gap between personal experiences and scientific advancements, making Usher syndrome more visible and better understood by those outside the community.

As someone living with Usher syndrome, I deeply appreciate the way USS amplifies the voices of those of us navigating this condition. They aren’t just advocating for a cure—they are making sure our stories are told, our challenges recognized, and our hopes for the future heard.

If you're looking for an organization that is making an impact through art, storytelling, and real action, the Usher Syndrome Society is an incredible force in the fight for awareness, research, and change.

My husband has Usher Syndrome, a disease that most people don't know about. As we've sought resources to support us in our journey, I have been really impressed with the Usher Syndrome Society. They are very active in driving awareness of the condition and in funding grants/forging partnerships that support research towards a cure. I'm very grateful for all that they do and look forward to continuing to support the organization!

Since learning about the Usher Syndrome Society, I've been impressed how they've gone from strength to strength with their mission and impact. Usher syndrome is a rare genetic disease which is the leading cause of combined deaf-blindness, and nearly no one knows about it.

I was first introduced to Nancy three years ago as I decided to take my condition more seriously and learn more about what I didn't know. Since then we've raised millions to help fund translational research grants, launched new partnerships with major medical centers like the Boston Children's hospital (PUSH program) and even done award winning awareness campaigns which included a Times Square takeover!

I'll continue to support this non profit for the foreseeable future as the team is truly a leader in its space and continues to work tirelessly for the benefit of the Usher syndrome community. Thank you.