Last Modified: 21 April 2019

Hello and welcome to the Freeman-Sheldon Research Group (FSRG)! 

Due to a lack of interest, FSRG is no longer conducting research but will continue to publish previously completed research and provide other information resources. If new interest in research participation developes, we will re-visit the possibility of restarting our research programme.

IF YOU NEED HELP, please Contact Us HERE! We will respond to appropriate communications in 24-48 hours. If you need help quicker, contact us directly. We aim to respond to all appropriate communications in under 12 hours. 

PLEASE NOTE: We only can provide general advice and information. We do not provide specific information, medical advice, or care but may be able to help you find care, if needed.


Our Mission


Freeman-Sheldon Research Goup, Inc. exists to improve the understanding of Freeman-Sheldon and Sheldon-Hall syndromes through peer discussion via the Outreach Department and patient-focused, patient-driven research ethically and respectfully conducted by the academic arm, FSRG deGruyter-McKusick Institute of Health Sciences.

About


FSRG began as a research-only organisation but quickly saw the need for a more peer-focused, support-oriented approach. One of the co-founders has FSS. FSRG acquired the former Freeman-Sheldon Parent Support Group (FSPSG), whose support functions were subsequently incorporated into the Outreach (Support Group) Department, whose leader has a child with FSS and deeply understands the special problems presented by FSS.

FSRG is happy to receive input on concerns and problems that should be considered in research, and FSRG is eager to help individuals and families in new ways. 

The Judeo-Christian worldview informs our perspective to how we want to treat people with love, caring, and support. We do not and never will be involved in any research or other activities that seem to reduce people to subjects. For this reason, FSRG is an independent patient-focused research and support group.

Disclaimer


The following disclaimer applies to all sites and sub-domains. All information appearing on this site and all sub-sites is written by the administrator, MI Poling, unless otherwise noted. All information is internally peer-reviewed. The vast majority of information contained on this site and links to other sites is appropriate for professionals, but there is some content for the general public. It should not be used to replace consultation with a physician or surgeon. 

Freeman-Sheldon Research Group, Inc. (FSRG) operations, including this site, are supported chiefly by donations. This site neither permits ads nor collects personal or non-personal information. The site does not host, receive funding from advertising, or from the display of commercial content. Any correspondence with the FSRG is governed by strict professional confidentiality. FSRG's specific privacy practices can be found here. For any question, please click here; the information sent to FSRG on this online form is initially received by the administrator and is forwarded to the appropriate Department, as required. It is not shared outside of FSRG in any event.

In addition to information on this site, there are external links to relevant internet resources and tools. While outside links contained on this site are reviewed for content, the administrator does not control or influence their content and cannot be held responsible for them.

Thank you,

MI Poling, admin.
Buckhannon, West Virginia,
The United States of America

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Recent Announcements

  • New Publications Continue In the first 3 months of 2019, FSRG had already published 5 new peer-reviewed medical journal articles on Freeman-Sheldon (now called Freeman-Burian or FBS) syndrome, Sheldon-Hall ...
    Posted 21 Apr 2019, 02:07 by MI Poling
  • FSRG's Facebook Page May be Gone, but FSRG is Still Alive and Well Maintaining a responsive social media presence, helping patients and families, and aiming for four new published medical journal articles per year to help doctors provide better care was becoming too ...
    Posted 16 Jan 2018, 06:30 by MI Poling
  • Changes Coming to FSRG During our years of difficulty, a large backlog developed associated with our 'Contact Us' form. Part of the difficulty was that we were unsure of how we would be able ...
    Posted 23 Apr 2017, 19:11 by MI Poling
  • Study Resuming We are excited to let you know the study, called Study of Therapeutic Outcomes and Practices in Freeman-Sheldon syndrome (STOP-FSS), now led by Dr Robert L Chamberlain, MD ...
    Posted 22 Apr 2017, 12:51 by MI Poling
  • Benefit Luncheon Set for December The Outreach Committee of First United Methodist Church (Buckhannon, WV, USA) decided at a recent meeting to devote the proceeds from the Micah Meal and loose change collections in December ...
    Posted 9 Oct 2012, 21:11 by MI Poling
Showing posts 1 - 5 of 15. View more »