The Usher Syndrome Coalition (USC) is the only organization in the world seeking to identify and support every person living with Usher syndrome. By providing hope, connection and information, we are building an active, empowered and informed community. 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.

Board members are expected to share knowledge of the USC, advocate for the USC, and directly or indirectly support the financial initiatives of the USC.


Anyone with a personal or professional connection to Usher syndrome and a desire to help the Usher Syndrome Coalition realize its vision to find, support and connect the 400,000+ people living with Usher syndrome worldwide with researchers, vital information, and others in the Usher syndrome community.


  • Complete the online form below, or 
  • Download the application here and scan/email to Krista at k.vasi@usher-syndrome.org or mail completed form to:
    Usher Syndrome Coalition, 9 Cornerstone Square, Suite 400-224 Westford, MA 01886 USA.

If you have questions, please email Krista at k.vasi@usher-syndrome.org or call 1-800-946-9203.

Application Form

Contact Information
Address Line 1 *
City *
State/Province *
Postal Code *
+ Country Code
Address Line 1
Postal Code
Additional Details:
(Family members, Age of Children, USH and/or other disability)
i.e. What do you like to do for recreation/leisure?
(Name of organization, Office held, Length of time served)
No file selected
I have read and understand the responsibilities of the USC Board Member position, and I agree to fulfill them to the best of my ability. I am willing to attend the quarterly virtual USC Board Meetings.

Open Positions:

Board Secretary
The USH Coalition Board Secretary plays a critical role in fostering communication and ensuring proper management and utilization of important coalition records. 

Primary Responsibilities:

  • Attend all board meetings
  • Schedule board meetings and ensures an adequate number of meetings are held per year,
  • Ensure the safety, accuracy, and accessibility of all board records
  • Record board meeting minutes
  • Prepare and send meeting materials far enough in advance of the meeting for each board member to review such materials, correct any errors, and prepare questions and comments.
  • Assume responsibilities of the chair in the absence of the vice chair

Board Treasurer
The USH Coalition Board Treasurer is charged with overseeing the management and reporting of the Coalition’s finances.

Primary Responsibilities:

  • Attend all board meetings
  • Maintain knowledge of the Coalition and personal commitment to its goals and objectives
  • Understand financial accounting for nonprofit organizations
  • Serve as the chair of the finance committee
  • Manage, with the finance committee, the board's review of and action related to the board's financial responsibilities
  • Work with the executive director to ensure that appropriate financial reports are made available to the board on a timely basis
  • Present the annual budget to the board for approval
  • Review the annual audit and answer board members' questions about the audit