Last Modified: 21 Apr 2017
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 Judeo-Christian oriented, multidisciplinary educational, research, and clinical organisation.
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.
In addition to research, the Group provides opportunities for students, from high school through fellowship training, and promotes advocacy and general public and professional awareness of the above-noted disorders. FSRG also provides limited clinical care to patients with any of the said disorders and, in certain limited circumstances, charity care for persons who have exhausted all other resources.
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 Judeo-Christian 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 secondary missions include providing limited education and training in the health sciences and supporting the citizens and economy of the local area, in ways consistent with its Judeo-Christian context and established purpose. FSRG accepts local patients who do not have FSS or a related condition on a case-by-case basis; patients must have a complex or serious medical problem and have exhausted other local medical resources, within reason, to either arrive at a diagnosis or treatment.
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 accord with highest Judeo-Christian 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.
FSRG is made up of the following seven Boards and Departments:
FSRG's former President and Physiologist-in-Chief, Dr. Rodger McCormick, and Secretary and Fellow, Mikaela Poling, appeared on Tender Loving Care, hosted by Dr. Greenbrier Almond, a psychiatrist, which aired live on Buckhannon's Channel 3 on 4 September 2012. During the interview, McCormick and Poling discussed what Freeman-Sheldon syndrome is and FSRG's mission, activities, and goals.