After twenty-nine years of independent operation, Joyce Dolcourt, director of Freeman-Sheldon Parent Support Group (FSPSG), said she felt, 'it was time to move on.' FSPSG is now in the process of transferring to the Freeman-Sheldon Research Group, Inc. (FSRG), a US-operated, faith-based, WV non-profit biomedical research group incorporated 2009. Both groups had very similar goals and objectives, which included improving the quality of life of individuals with Freeman-Sheldon (FSS) and Sheldon-Hall syndromes (SHS) by furthering research, advocacy, and education for families, professionals, and the wider lay community.
'FSRG is working with the former staff of FSPSG to ensure a smooth transition without interruption of support or access for FSPSG members,' said FSRG Secretary, MI Poling. Through their Outreach Department, Poling said FSRG will continue the work of FSPSG, including helping individuals and families impacted by FSS network and share their experiences. She added that through in-house initiatives and affiliations, members will also have new opportunities and increased access to clinical research studies and non-research related consultations. Former FSPSG members will receive letters over the coming months including descriptions of some of the new opportunities and resources offered by FSRG.
Dolcourt thanks all the support group members and the medical advisory panel for their support and friendship throughout the years and wishes them well as more is learned about FSS and SHS.
Poling cautioned, 'Please note, there has been some delay in verifying new support group members during this process. We are sorry and are working to correct this problem.' She continued, 'FSRG looks forward to increased opportunities to help individuals affected by FSS and SHS and is committed to improving their quality of life.'
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