Freeman-Sheldon Research Group, Inc.

General Organizational Information

Organization Name:

Organization Acronym:

FSRG

Year Established:

2008

Type of organization:

Condition(s)-specific organization

Mission Statement:

The mission of the Freeman-Sheldon Research Group, Inc. (FSRG) is to provide a Judeo-Christian faith-based setting (1) to improve the quality of life of individuals with Freeman-Sheldon (FSS), Sheldon-Hall syndromes (SHS), and related entities by furthering research, clinical care, advocacy, and education for families, professionals, and the wider lay community; (2) for education and training in the health sciences; and (3) to facilitate fellowship and professional exchange concerning the above.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Arthrogryposis

Arthrogryposis Distal Type 2B

Arthrogryposis due to Muscular Dystrophy

Arthrogryposis Multiplex Congenita

Arthrogryposis Multiplex Congenita Distal

Arthrogryposis Multiplex Congenita Distal Type 1

Arthrogryposis Multiplex Congenita Whistling Face

Arthrogryposis Multiplex Congenita, Distal Type 2

Congenital Muscular Dystrophy

Cranio-Carpal-Tarsal Dystrophy

Freeman Sheldon Syndrome

Organizational Contact Information

Prefix:

Ms.

Title:

Secretary and Research Director

Degree:

First Name:

Middle Initial:

Last Name:

Poling

Address:

RR 2, Box 154

Buckhannon, WV, 26201-9519

United States

See map: Google Maps

Phone:

+1 3044609038

Email:

poling_mi@fsrgroup.org

Website Address:

http://fsrgroup.org

Resources and Services Provided

Languages spoken:

English

German

Russian

Spanish

Printed materials available in:

English

German

Russian

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Parents

Fathers

Mothers

Siblings

Grandparents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Professional counseling

Peer-to-peer counseling

Crisis intervention

Medical referrals

Clinical or treatment centers

Genetic information

Referrals for non-medical services

Financial referrals

Awareness Programs

Advocacy

Speakers

E-mail list

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Journal articles on condition

Bibliography

Slides

Research updates

CD Roms

Lending library

Resource guide

Student materials

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Cohort Development:

Registry of affected individuals

Disease Characterization:

Epidemiological studies

Organization has access to patient medical records

Research Management:

Linking researchers and families

Participant recruitment

Initiating and conducting research

Organization has intellectual property (IP)

Providing information about clinical trials

Major research interests of the organization:

stress physiology, malignant hyperthermia, thermoregulation, histopathology of muscle, development of therapeutic protocols and novel interventions, psychophysiology, exercise therapy, post-traumatic stress syndromes, quality of life

Current projects:

Study of Therapeutic Outcomes and Practices in Freeman-Sheldon Syndrome: a Retrospective, Cohort Survey; Freeman-Sheldon Syndrome Quality of Life Study (FSS-QLS): Cross-sectional, Cohort Study of Concomitant Disorder-Specific Contributors to Quality of Life and Clinical Outcome; Freeman-Sheldon Syndrome Evaluation and Diagnosis in Clinical Settings (FSS-EDICT) I: a Case-Control, Cross-Sectional Study of Baseline and Stress Physiology Parameters