October 5, 2017

Dear BDSRA Friends,

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.

Some Board basics:

  • Terms are for 3 years, and Board members must be current dues paying members of BDSRA.
  • By-laws indicate that 60% of the board membership must be a parent of an affected person. Board members may serve consecutive terms.
  • Board members are required to attend two meetings in person each year and are responsible for paying the associated costs for transportation, hotel and meals. One meeting is held in the winter and one is scheduled the day before the annual family conference begins each July.
  • Other meetings are held by conference call, typically on Sunday evenings approximately four times a year, plus extra meetings if needed for special deliberations.
  • Board members with marketing and communications, fundraising, social media, finance, business, accounting, and medical skill sets 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 and to educate others about the projects and achievements of the organization.

Deadlines, Procedures and Timeline for Nominations and Voting:

  • By October 15, 2017 contact board member Darlene Royalty at royalty@adams.net if you are interested in being nominated and running for a position on the Board of Directors. You must return your personal fact sheets to her by October 22, 2017.
  • Ballots for 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 them by November 15, 2017.

A reminder about paying current BDSRA member dues

  • In accordance with the bylaws of BDSRA, ballots will be mailed only to those who have paid their 2017 membership dues as of October 15, 2017. Dues may be paid online by visiting bdsra.org  and clicking on the “Become A Member” link.  A membership dues form will appear and can be completed along with a credit card payment.  Each paid membership has 1 vote in board elections.  Dues are $40 for one calendar year and $110 for three years.

Please be in touch with us if you would like to discuss board participation or know another person you believe would be a great candidate.