About FSRG

Last Modified: 16 Jan 2018

Incorporation and Function

Incorporated as a non-profit in the State of West Virginia, USA, 5 May 2009 and founded in memory of the late Catherine 'Splash' deGruyter Williams (1924-2007) and Victor Almon McKusick, MD (1921-2008), 'father of medical genetics', the Freeman-Sheldon Research Group, Inc., is organisation dedicated to helping individuals and families affected by Freeman-Sheldon and Sheldon-Hall syndromes (FSS and SHS) and improving available knowledge of these exceptionally rare and poorly understood conditions.

FSRG focuses its research efforts on Freeman-Sheldon syndrome (FSS) and related or relevant disorders, especially Sheldon-Hall syndrome (SHS), as it shall find appropriate.

Coat of Arms

The ideals and principles of the FSRG are embodied in its coat of arms. The coat of arms depicts a green shield, with the Staff of Asclepius in the middle. Behind the shield are two crossed battle swords, with red sashes. Atop the shield is an open Bible, and to either side of the shield are two white stallions, reared for battle. The theme of battle represents a strategic fight against disease, with the colours of red for courage and green for the medical field. The Bible holds the place of prominence, as our beacon in the fight.


FSRG's mission is to provide a faith-based setting to improve the quality of life of individuals with two exceptionally rare and poorly understood conditions present before birth that affect muscles: Freeman-Sheldon and Sheldon-Hall syndromes (FSS and SHS)—sometimes called 'whistling face' or other names—and related conditions by furthering research, medical care, advocacy, and education for families, professionals, and the wider lay community.


FSRG's general goals are as follows: (1) create a clinical knowledge-base, upon which a strategy to reduce the biopsychosocial burden of the target syndromes on patients, families, and others can be developed; (2) engineer a dynamic, needs-based support programme for patients and families; (3) improve access and communication for peer-level support, guidance, and professional help to patients and families, without regard to research participation status; (4) reduce morbidity and mortality from complex and serious conditions, with which established local medical resources cannot cope, and draw interest to the local community's assets, attractions, and beauty to improve socio-economic viability and individuals' quality of life in the region; and (5) ensure strict moral and ethical conduct of all FSRG-sanctioned activities and protection of all who act in Our values.


FSRG is administered by the Ethics and Legal Department, to which all departments are accountable and which comprises the Institutional Review Board (IRB), and daily operations are carried out by the Executive Board, chiefly the President and Secretary, with oversight from the IRB Director and Chief Chaplain. FSRG has a US Office of Human Research Protections and Food and Drug Administration Registered Institutional Review Board (IRB) based in Fairmont, West Virginia, USA. Presently, FSRG does not charge any fees and operates on a strict volunteer basis.

Leadership for FSRG is provided by the following two Boards and Departments:
  • The Executive Board includes the officers, which are the President, Vice-President, Secretary, Treasurer, Chaplain, and Chief Ethics Officer. The Chief Ethics Officer's position may be held by the Chaplain, Treasurer, and another qualified person. 
  • The Ethics and Legal Department includes the Institutional Review Board and has authority on all matters involving significant ethical or legal concerns.