Amy Fenton Parker, Executive Director

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

Morgan DeBoth, Director of Family Support

As Director of Family Support Morgan is dedicated to assuring that all families can access resources, expert clinicians, and other families in the most timely and friendly way possible. She develops multi-platform resources utilizing our network of topic area experts. These resources include:

  • Facebook chats
  • New Family Packets
  • Web site updates
  • Online survey development
  • Education at the family conference
  • Teacher Resources
  • Equipment exchange
  • Family conference/stipends
  • Clinician referral
  • School IEP and teacher consultations
  • Consultation on family fundraisers for BDSRA
  • Providing support to families in clinical trials
  • Bereavement Support

If you need resources for yourselves, family, teachers or clinicians, please reach out to Morgan.

Morgan is also developing advocacy resources for those families who wish to meet with their local, state, or federal representatives. In addition to the educational and advocacy role, she will continue to manage the yearly scientific merit review process that helps determine funding for global research grants.

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

Colin Montieth, Development Coordinator

As Development Coordinator Colin will work closely with 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

Board of Directors

Darlene Royalty


Barbara Wuebbels, RN, MS

Vice President

Brock Benroth

At Large

Fred Surrey

At Large

Bob Jensen


John Ireland

SIBS Representative

Tony Ferrandino

At Large

Donna Fogle


Kate Haller

At Large

Trent Lewis

At Large

Barbara McDonough

At Large

David Pearce, PhD

At Large

Rene Martinez

At Large