About FSRG

Last Modified: 24 Dec 2013

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.

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 swards, 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.

Mission

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.

Goals

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 spiritual support programme for faculty, staff, students, and patients within the educational, research, and patient care settings that keeps God at the centre and maintains the primary mission of FSRG to always be doing God's will in the world; (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; (5) cultivate and inspire tomorrow's Jewish and Christian clinician-scientist leaders and teachers; and (6) ensure strict moral execution of all FSRG-sanctioned activities and protection of FSRG faculty, staff, and students who act in accord with highest Judeo-Christian values.

Organisation

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 established the only Office of Human Research Protections and Food and Drug Administration Registered and Federalwide Assured Institutional Review Board (IRB) in the immediate area. Most FSRG officers and staff are ordained, candidates for ordination, or lay clergy from United Methodist Church and Russian Orthodox Church, and three FSRG faculty and students are active physicians. Presently, FSRG does not charge any fees and operates on a strictly volunteer basis.

FSRG is made up of the following seven 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.
  • The Research Department focuses on applied physiology and therapeutics. 
  • The Education Department focuses on health sciences education and training within the FSRG's research and clinical scope of activities.
  • The Outreach Department is the support group and focuses on advocacy, family networking, and education about FSS, SHS, and related conditions for families, professionals, and the wider lay community.
  • The Activities Support Department provides necessary operational services.
Plan

FSRG has a detailed three-part research programme to (1) identify problems attendant to FSS, SHS, and related conditions; (2) quantify functioning of the mind and body as affected by FSS, SHS, and related conditions and examine quality of life issues for patients, families, and others affected by FSS, SHS, and related conditions; and (3) develop targeted therapies for FSS, SHS, and related conditions based on newly accrued knowledge-base, specifically pharmacological and physiotherapy-based modalities. Support group input will inform research directions, and support group members will meet annually for peer support and other activities. 

Operationally, clinical faculty and students soon will be making available 'health assessments' as thank-you gifts for persons making donations, and as FSRG grows, FSRG will be able to serve as a referral centre for specialised testing. FSRG faculty and staff will be selling books they are drafting, and Activities Support Department is developing some database-based technologies that will be offered as software-as-a-service to support FSRG's operation. 

Internationally, FSRG faculty and students have begun operations in Guatemala, and plans have been discussed to expand to Europe (Spain and Germany), as three qualified researchers in these areas have expressed an interest.

Dr. Greenbrier Almond Interview of Dr. Rodger McCormick and Mikaela Poling


FSRG 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.