Volunteer for the Coalition
With three part-time staff and a host of volunteers, 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 a cure becomes a reality.
There is much more work to be done. Below is 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 that your skills and/or expertise may benefit. We are certain we will find a way for you to make a difference.
USH Coalition Committees
Membership and Outreach Committee
The USH Coalition Membership Committee is dedicated to developing programs and infrastructure at the local level to grow the Coalition community. They are responsible for recruiting new members for both the Coalition community and USH Trust registry, insuring the retention of current members, and helping achieve steady and healthy growth.
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.