Board of Directors

Board of Directors

The Board is the governing body of the Foundation. The Board supports the work of the Foundation and provides leadership and strategic governance to advance the mission.

Our Board of Directors

Patient Advisory Board

The charge of the Patient Advisory Board is to support the leadership of the National Scleroderma Foundation by advising the Board of Directors on matters related to patient support, education, and research. The Patient Advisory Board serves as a link between the Foundation and the patient community and takes a leading role in disseminating patient information and education, developing timely educational programming, and establishing research priorities. In addition, the Patient Advisory Board is charged with mentoring new and potential leaders and assisting with the development of Foundation programs and services designed to achieve the mission priorities.

Patient Advisory Board:

Melody Breen
Evamarie Cole
Peggy Collins
Karen Gottesman
Carla King
Amanda Tufaro
Ann Mogilevsky
Monica Ramirez
Ron Sasso
Dr. Virginia Steen, ex officio

Chapter Leadership Council

The Chapter Leadership Council consists of prominent individuals from the scleroderma community who partner for the overall success of the National Scleroderma Foundation. The Council is made up of the Chairs of each chapter’s Chapter Advisory Committee. One representative from the Chapter Leadership Council sits on the National Board of Directors. In addition to creating a nationwide network of chapter leadership, this allows for greater linkage and communication between the national board and chapters.

The Chapter Leadership Council was approved by the Board of Directors in December 2021 and member terms will begin in July 2022.