Who We Are

 2017 Group Photo

Cincinnati Children’s Hospital

Kasiani Myers, MD
Co-Director

Anna Butts, RN, CPN
Research Nurse

Stella Davies, MBBS, PhD
Investigator

Allie Duell
Research Coordinator

Sara Loveless, RN
Research Nurse

Joan Moore
Research Coordinator

Leann Mount, RN
Clinical Care Manager

Boston Children’s Hospital

Akiko Shimamura, MD, PhD
Director

Maggie Malsch, RN
Research Nurse

Brian Sheehan
Research Coordinator

SDS Registry Advisory Committee

Responsibilities of the Registry Advisory Committee include the following:

  • Provide advice and support for the mission of the Registry
  • Education and outreach for the Registry
  • Participate in annual conference call of Registry Investigators, Advisory Board and Lay
  • Representatives

SDS Registry Scientific Committee

Responsibilities of the Scientific Committee include the following:

  • Scientific review of submitted proposals for merit and impact
  • Identify ad hoc reviewers with expertise in the proposed field of study
  • Identify research areas of high priority for the SDS Registry

SDS Registry Lay Representatives

Responsibilities of the Lay Representatives include the following:

  • Communicate questions or concerns from the Lay community to the Registry
  • Communicate questions or concerns from the SDS family foundations to the Registry
  • Educate Lay community about the Registry
  • Provide updates to the Lay community and family foundations regarding Registry activities and studies
  • Participate in annual conference call of Registry Investigators, Advisory board and Lay Representatives
  • Encourage Registry participation and support (eg: fund-raising)