The Usher Syndrome Coalition has become the heartbeat of the Usher syndrome community. By providing hope, connection, and information, we are empowering and engaging those affected. This gives researchers access to their most important resource: people living with Usher syndrome. Building a community will ensure treatments and a cure become a reality.
With three staff members and a growing core of volunteers, there is still much more work to be done. Below is a list of our priority needs and a description of the USH Coalition Committees, consisting of our Board Directors and volunteers from the Usher community.
If you would like to join our efforts please fill out the form below and note the committee and/or project that your skills and expertise may benefit. We are certain we will find a way for you to make a difference.
The Usher Syndrome Coalition is expanding and recruiting new volunteers and interns to assist in the following tasks:
An USH Ambassador is a volunteer who is knowledgeable about Usher syndrome and the community, and is willing to be a point of contact in their state or country. Ambassadors educate their community about Usher syndrome and the USH Trust Registry, the largest international registry exclusively for individuals with Usher syndrome; provide information and resources; connect with others with Usher syndrome; and may represent the Coalition at community activities such as workshops and conferences.
Financial Review and Planning
Create a comprehensive financial plan to grow and protect the funds in which the Usher Syndrome Coalition needs to support our mission. Provide financial guidance about the creation of an endowment, investment decisions and the development of other revenue streams.
Facilitate the involvement of the Usher Syndrome Coalition in advocating for increased federal funding for Usher syndrome research. Conduct communications and interacts with government officials and agencies. Monitor the federal register and other government publications to identify possible sources of grant funding.
Social Media Outreach
Develop and implement the Usher Syndrome Coalition’s social media strategy. Create and maintain online content that attracts attention, generates interest, and is easily shared with social networks. Monitor, post to, and analyze social media channels to build a community of followers and enhance interaction, ensuring messaging is consistent, simple, memorable and authentic. Establish relationships with bloggers and other members of the online Usher syndrome community.
Science News Coordination
Curate the most recent science news related to Usher syndrome research. Maintain science news content on our website and social media. Provide clear, easy to read summaries of research progress to distribute to the Usher syndrome community.
Ensure the accessibility of the Usher Syndrome Coalition’s online content and resources. Ensure best practices for designing and developing digital content that meets federal accessibility standards. Provide image descriptions and/or transcriptions for social media posts and USH Talks. Perform regular accessibility audits of the Coalition’s online content.
USH Coalition Committees
Outreach and Community Building Committee
The USH Coalition Outreach and Community Building Committee is dedicated to growing the Usher community at the local level. "USH Ambassadors" serve as a resource in their state or country, providing information and resources to individuals living with Usher syndrome, their families, and the community at large. They help to build and connect the Usher community and the USH Trust registry, the largest international registry exclusively for the Usher community.
Marketing and Development Committee
The USH Coalition Marketing and Development Committee is made of creative and strategic thinkers who develop and implement marketing initiatives and activities to increase awareness of the organization and to attract new members. They work to spread the organization's mission and brand through compelling and innovative promotional and marketing materials across all marketing channels.
The USH Coalition Science Committee is responsible for establishing the organization as a "Center of Excellence" on all things Usher syndrome, analyzing and communicating the latest cutting-edge research and information to the board and Usher syndrome community.
Government Relations Committee
The USH Coalition Government Relations Committee is made up of movers and shakers committed to making impactful and lasting changes on Capitol Hill. Having already allocated 11M in funding for Usher syndrome research, the committee's task is to ensure progress of that funding, and all other federal and state legislative, regulatory, and judicial developments that may affect the Usher syndrome community.
Finance and Audit Committee
The USH Coalition Finance and Audit committee is responsible for the organization's financial sustainability. It provides oversight on all income and expense related issues, acts as a resource to help correct fiscal problems, discusses fiscal issues, and ensures financial reporting requirements are fulfilled.