Collaborations
Together we can accomplish so much more
The Usher Syndrome Society is committed to fostering strong partnerships with compassionate supporters, like-minded organizations, and innovative researchers. These alliances amplify our collective efforts and broaden our impact, driving us closer to our ultimate goal of discovering treatments and a cure for Usher syndrome.
USH Partners & Programs
Partnering with other Usher syndrome organizations allows us to extend our reach, ensuring that no individual or subtype is left behind. By joining forces, we amplify our collective voice, weaving a robust network of connection, community support, and advocacy.
Usher syndrome coalition
While the Usher Syndrome Society is working hard to introduce Usher syndrome to the world and raise research dollars, we rely on the Usher Syndrome Coalition to provide information and support to individuals and families affected by Usher syndrome and to be the most comprehensive resource for the Usher syndrome community. Our organizations work together to educate the public while continuing to build a necessary USH community providing support until a cure is found.
The Usher Syndrome Coalition is also working to generate the most comprehensive Usher Syndrome Data Collection Program to make patient data of individuals with Usher syndrome available to researchers. This program is designed to help expand and improve medical research to accelerate the development of new drugs, devices, and therapies. We are dedicated to supporting the Usher Syndrome Data Collection Program, helping to identify everyone in the world living with Usher syndrome.
Usher syndrome coalition
The Usher Syndrome Coalition is also working to generate the most comprehensive Usher Syndrome Data Collection Program to make patient data of individuals with Usher syndrome available to researchers. This program is designed to help expand and improve medical research to accelerate the development of new drugs, devices, and therapies. We are dedicated to supporting the Usher Syndrome Data Collection Program, helping to identify everyone in the world living with Usher syndrome.
Horizon Usher foundation
The Horizon Usher Foundation is headquartered in Barcelona and was founded by Benjamin Demarquilly, an elite model for Giorgio Armani, who is living with Usher syndrome Type 2A. With a common goal of raising awareness and funds for research, The Usher Syndrome Society and the Horizon Usher Foundation have joined forces to promote both organizations’ storytelling efforts and increase the visibility of their campaigns across the globe.
U.S.H.E.R. Research Program
U.S.H.E.R. (Usher Syndrome Healthy Eye Restoration) Research Program
For over a decade, the Usher Syndrome Coalition has advocated for increased NIH/NEI funding for Usher syndrome vision loss research, although the allocated funds remain significantly lower than those for other rare diseases. Recently, the Usher Syndrome Society, the Usher Syndrome Coalition, and Usher 2020 have joined forces, requesting over $50 million in federal funding to initiate critical trials. Last month, they conducted successful meetings with key congressional appropriations members to secure support for U.S.H.E.R.(Usher Syndrome Healthy Eye Restoration) Reseaarch Program.
In a collaborative effort, Peggy Borst (USS Board Member and Director of Research Advocacy), Krista Vasi (USC Executive Director), and Susie Trotochaud (USHER 2020) along with a group of people living with Usher syndrome, engaged directly with Members of Congress. Leveraging Peggy’s connections from former Congressman Greg Laughlin, who now supports the initiative pro bono, they have facilitated pivotal discussions with influential figures, including House appropriations Chairwoman Emeritus, Kay Granger. They are urging Congress to fund the U.S.H.E.R. (Usher Syndrome Healthy Eyes Restoration) Research Program, aiming to launch vital trials and enhance prospects for finding treatments and a cure.
U.S.H.E.R. Research Program
U.S.H.E.R. (Usher Syndrome Healthy Eye Restoration) Research Program
For over a decade, the Usher Syndrome Coalition has advocated for increased NIH/NEI funding for Usher syndrome vision loss research, although the allocated funds remain significantly lower than those for other rare diseases. Recently, the Usher Syndrome Society, the Usher Syndrome Coalition, and Usher 2020 have joined forces, requesting over $50 million in federal funding to initiate critical trials. Last month, they conducted successful meetings with key congressional appropriations members to secure support for U.S.H.E.R.(Usher Syndrome Healthy Eye Restoration) Reseaarch Program.
In a collaborative effort, Peggy Borst (USS Board Member and Director of Research Advocacy), Krista Vasi (USC Executive Director), and Susie Trotochaud (USHER 2020) along with a group of people living with Usher syndrome, engaged directly with Members of Congress. Leveraging Peggy’s connections from former Congressman Greg Laughlin, who now supports the initiative pro bono, they have facilitated pivotal discussions with influential figures, including House appropriations Chairwoman Emeritus, Kay Granger. They are urging Congress to fund the U.S.H.E.R. (Usher Syndrome Healthy Eyes Restoration) Research Program, aiming to launch vital trials and enhance prospects for finding treatments and a cure.
Corporate Partners
The generous support of our corporate partners provides us with vital research funding and access to greater opportunities to connect with diverse audiences and elevate awareness of Usher syndrome.
Corderman & Company inc.
Corderman & Company, a Construction Management firm based in Boston, MA, is a founding sponsor of the Usher Syndrome Society. The Corderman & Company team is deeply committed to helping the USH Society spread awareness for this rare disease by promoting their educational and fundraising events and by incorporating information about the USH Society onto their own company materials and branding. Each year Corderman & Company also provides a considerable donation to the USH Society to help us fund groundbreaking Usher syndrome research and continue our awareness efforts.
The unique partnership between The Usher Syndrome Society and Corderman & Company was recognized by the Boston Business Journal’s 2023 Community Collaboration Award.
Corderman & Company inc.
Corderman & Company, a Construction Management firm based in Boston, MA, is a founding sponsor of the Usher Syndrome Society. The Corderman & Company team is deeply committed to helping the USH Society spread awareness for this rare disease by promoting their educational and fundraising events and by incorporating information about the USH Society onto their own company materials and branding. Each year Corderman & Company also provides a considerable donation to the USH Society to help us fund groundbreaking Usher syndrome research and continue our awareness efforts.
The unique partnership between The Usher Syndrome Society and Corderman & Company was recognized by the Boston Business Journal’s 2023 Community Collaboration Award.
Initiative Global Media
The Usher Syndrome Society partnered with Initiative Global Media Agency, a media agency with Global Headquarters in New York City, to launch a groundbreaking awareness campaign titled “Every Second Counts”. With expertise in unlocking business growth for the world’s most ambitious brands, Initiative offered their expertise to help the Usher Syndrome Society in our mission to raise public awareness and funds for research to find treatments and a cure for Usher syndrome. Evidenced by the “Every Second Counts” campaign, Initiative is leveraging their media partnerships to extend our reach and amplify our message through the collective power of storytelling.
Brand Collaborations
Partnering with other Usher syndrome organizations allows us to extend our reach, ensuring that no individual or subtype is left behind. By joining forces, we amplify our collective voice, weaving a robust network of connection, community support, and advocacy.
Orangetheory Fitness
Over the last few years, the Usher Syndrome Society has partnered with Orangetheory studios around the country to host annual OTF X USH Sight, Sound, & Strength fundraising and awareness classes. In June 2023, Orangetheory studios around the country participated in our national OTF X USH day, where we raised thousands of dollars for critical hearing and vision research by offering a dedicated donation class for Usher syndrome. As part of OTF X USH, we also hosted a “live” class taught by Rebecca Alexander and OTF coach, Rebecca Burow, where we emphasized inclusivity, strength, and offered more education on Usher syndrome.
Orangetheory Fitness
Over the last few years, the Usher Syndrome Society has partnered with Orangetheory studios around the country to host annual OTF X USH Sight, Sound, & Strength fundraising and awareness classes. In June 2023, Orangetheory studios around the country participated in our national OTF X USH day, where we raised thousands of dollars for critical hearing and vision research by offering a dedicated donation class for Usher syndrome. As part of OTF X USH, we also hosted a “live” class taught by Rebecca Alexander and OTF coach, Rebecca Burow, where we emphasized inclusivity, strength, and offered more education on Usher syndrome.
Gapfit
In recognition of International Women’s Day in 2020, GapFit highlighted Usher Syndrome Society board members, Rebecca Alexander and Hannah Corderman, helping to bring awareness to Usher syndrome and the incredible achievements of our USH women. The commercial features GapFit shirts designed by Hannah using Rebecca’s inspirational mantra “Breathe In Peace. Breathe Out Fear”.