Tauna Batiste, MS, Executive Director

As she guides the work of the organization, Tauna is thrilled to be working with so many talented staff, volunteers, researchers and clinicians.  In her role, she represents BDSRA internationally at conferences, industry advisory boards, and rare disease consortia.  She speaks to audiences large and small about the needs of families experiencing all forms of Batten. Whether in a private message on Facebook, by phone or email, she is in touch with families about their needs.  She guides publications, communications, board tasks and scientific progress.  As BDSRA ushers in more clinical trials, significant amounts of her time is spent working with industry partners developing plans, trouble-shooting and advocating for family needs.

Direct: (614) 973-6011
(800) 448-4570 ext. 11

Tracy Kirby, Director of Family Services

Tracy loves to work with families.  She wants to assure that they get to resources, clinicians, and other families in the most timely and friendly way possible.  Call or email Tracy with questions about:

  • Equipment exchange
  • Family conference/stipends
  • Clinician referral
  • Sibling carrier testing program
  • School IEP and teacher consultations
  • Consultation on family fundraisers for BDSRA
  • Providing support to Columbus-based trial families

Direct: (614) 973-6013
(800) 448-4570 ext. 13

Colin Montieth, Development Coordinator

As Development Coordinator Colin will work closely with Tauna Batiste, our Executive Director, to support the execution of the BDSRA’s comprehensive, mission-driven advancement program.  Additionally, Colin will be involved with stewardship activities related to non-profit fundraising and relationship management, including working with a team to create and implement the fundraising, development and communications strategy for BDSRA, as well as donor and grant research and tracking.

Direct: (614) 973-6012
(800) 448-4570 ext. 12