The Batten community has had an historic year in treatment and science—with an FDA approved treatment for CLN2, gene therapies moving forward, and new discoveries announced seemingly each week. Help BDSRA keep this momentum as we fulfill our new, expansive strategic plan beginning in 2018. It is an exciting time and we want you to be part of the new vision.
The BDSRA Board of Directors will have three available seats beginning January, 2018. The board and staff seek individuals who are motivated by the opportunities and challenges of fundraising and resource development, governing, research, and outreach to families.
BDSRA Board Service Basics:
- Terms are 3 years, and board members must be paid dues members of BDSRA.
- By-laws indicate that 60% of the board must be comprised of a parent of an affected person. Board members may serve consecutive terms.
- Board members are required to attend 2 meetings in person each year and are responsible for paying the associated costs for transportation, hotel and meals. One meeting is held during the winter and one is scheduled the day before the annual family conference in July.
- Other meetings are held by conference call, approximately four times a year.
- Board members with marketing and communications, fundraising, social media, finance, business, accounting, and medical skills are sought at this time.
- Most important to BDSRA is the passion for our work on behalf of families, strong support of staff, and active advocacy and outreach efforts to tell the BDSRA story.
Anyone who is interested in running for a position on the board must contact board member Darlene Royalty at firstname.lastname@example.org by October 15, 2017. Prospective board members are required to complete a personal fact sheet for the election ballot and return them via email to Darlene by October 22, 2017.
Voting ballots to all current, paid BDSRA members will be mailed by October 30, 2017, and must be returned via U.S. mail to the accounting firm collecting the ballots by November 15, 2017.
A reminder about paying BDSRA member dues:
According to the bylaws of BDSRA, ballots will be mailed only to those who have paid their 2017 membership dues as of October 15, 2017. Can’t remember if you’ve paid your dues? Please email Tracy Kirby at email@example.com to inquire. Dues may be paid online by visiting www.bdsra.org, and clicking on the link “Become A Member.” A membership dues form will appear from the link that can be completed along with a credit card payment. Each paid membership has one vote in board elections. Dues are $40 for one calendar year and $110 for three years.