The Board of BDSRA is committed to providing the Batten Community with support, advocacy tools and a drive to optimal patient care and finding a cure. We have openings now on our Board for individuals who can bring their expertise and their can-do attitudes to help advance the mission of the organization. Applications are due October 15, 2026. To apply please complete the form below.
This is an actively working board where each board member may wear multiple hats. We urgently need people experienced in the following areas:
- SIBS leadership
- Law (attorney)
- Special education
- Human resources
- IT
- Accounting, specifically a CPA with a fund accounting background
- Fundraising
- Marketing, social media and public relations
Applications are due October 15, 2026. To apply please complete the form below.
With nearly 40 years in operation, the Batten Disease Support and Research Association supports patients and families throughout all the phases of their Batten journey in the United States and 38 additional countries. Board Members play a very active role in delivering on the BDSRA mission. Each Board Member is a key collaborator of the BDSRA board and team. Consider how you can put your passion into action and make an impact in the Batten community.
Job Description: The Board Member is directly accountable to the Board Chair and is responsible for the following:
- Serve for a minimum of 3 years, renewable and can be served consecutively.
- Help to set policy and goals for the implementation of BDSRA programs in accordance with its stated goals.
- Provide oversight in the affairs of BDSRA, by regulating its economy, approve expenditures and commitments according to Board policy.
- Participate in searches, hiring, terminating, and evaluating various employees.
- Attend monthly meetings of the board, which include two in-person meetings per year and remote meetings monthly. The two in-person meetings are held:The Winter Board meeting (January/February) early in the year and the Summer Board meeting at the Annual Family Conference. Attendance for these two meeting is required in person, unless excused.
- Elect board officers.
- Participate in subcommittees of the Board.
- Advocate for BDSRA and its mission.
- Provide support for the organization, families and research needs of Batten disease.
- Resource the organization with knowledge, relationships, and fundraising.
- Work with the BDSRA staff as needed for the good of the organization.
Minimum Qualifications:
- Must be a family member or advocate for Batten disease.
- Must be willing to travel at own expense.
- Experience in non-profit, mission-driven organizations (healthcare focus) is a plus.
- Must be able to attend up to 12 meetings per year.
