The Batten Disease Support, Research, & Advocacy Foundation is the foremost Batten disease patient advocacy organization for all CLN types in North America. With over 35 years in operation, BDSRA supports patients and families throughout their Batten journey, funds research, and advocates for treatments and cures. Board Members are asked to advocate and help to resource the organization, which is crucial to BDSRA's work. Each Board Member is a key collaborator of the BDSRA team and an invaluable resource to the President & CEO.
The BDSRA Board of Directors is made up of talented, caring, and knowledgeable people who each bring something unique to enrich the foundation. We trust that there are others within our Batten community who have special skills that would also be beneficial to the board.
The Board aspires to have someone multilingual, a researcher, a clinician, or an accomplished fundraiser. Someone with expertise in information technology systems, an educator, or a lawyer to join us - just to name a few – are more examples of experience that would enhance the board. The possibilities for helping are endless. If it is on your heart to join us, we encourage you to get involved in some way.
If you are considering this role and have questions, please reach out to any of the board members for more information.
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.
- Resource the organization with knowledge, relationships, and fundraising.
- Help to set policy 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 searching, hiring, terminating, and evaluating the President & CEO.
- Attend quarterly board meetings, including in-person and remote meetings annually. The Board Meetings held in the winter and at the Annual Family Conference requires in person attendance, unless excused. Other meetings may be scheduled as needed.
- Participate in subcommittees of the Board.
- Advocate for BDSRA and its mission.
- Provide support for the organization, families, and research needs of Batten disease.
- Work with the President & CEO as needed for the organization's good.
Minimum Qualifications:
- Must be an engaged advocate for Batten Disease.
- Must be willing to travel at each member’s own expense.
- Must be able to attend a minimum of 4 meetings per year (Typically two virtual meetings & two in-person)
- Experience in non-profit, mission-driven organizations (healthcare focus) is a plus.
