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 to help, due to sad and difficult personnel issues. For those who suffered because of this delay, I am truly sorry. As with all problems associated with FSRG, I take full responsibility, am making changes, and hope to earn your trust.
Starting today, I have begun to respond to all appropriate (non-solicitation) form submissions. The backlog extends to 2012, and each requires and will receive thoughtful replies to the matters they disclosed when they submitted the form. So, as you may imagine, this will take some time, but I will be working on it daily until complete.
Additionally, if you have visited our website fsrgroup.org since yesterday, you will notice some changes. More updates will follow in the coming weeks and months. Please post any recommendations for changes here.
Thank you for the opportunity to earn your trust.
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, is now active and accepting patients! Though we had a lot of difficult problems in past years, we have made a lot of changes to how we do things in FSRG, learned from other research we have done (https://www.ncbi.nlm.nih.gov/pubmed/?term=poling+mi%5BAuth%5D), and improved this study a lot.
The study involves surveys, review of medical records, and a video-based interview (for example, Skype, FaceTime, etc.) to learn more about problems, experiences, helpful treatments, and quality of life for patients with Freeman-Burian syndrome, Sheldon-Hall syndrome, distal arthrogryposis type 1, and distal arthrogryposis type 3, also called Gorden syndrome. (Some other names for Freeman-Burian syndrome include: Freeman-Sheldon syndrome, distal arthrogryposis type 2A, craniocarpotarsal dysplasia (or dystrophy), or whistling face syndrome.)
We want to know what is helpful, so that we can report it in the medical literature to give doctors more information about how to help patients. These conditions are very challenging to treat, partly because of the big differences in individual patients and partly from lack of information on treatment outcomes. The goal is to start with having at least 20 persons participate over the summer and fall.
Anyone interested should send me a personal message, fill out the contact form at https://fsrgroup.org, or email us for more information.
This is very important, and we hope everyone will consider it.
Mikaela I. Poling, BA
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 to the Freeman-Sheldon Research Group, Inc., a Judeo-Christian medical research, education, and patient support group. This organization is spearheaded by three members of the Church's congregation, Dr. Rodger McCormick, President; Dr. Robert Chamberlain, Vice-President; and Mikaela Poling, Secretary. Also working with this group is Dr. Gerald P. Perman, Clinical Professor of Psychiatry at George Washington University. Others at Johns Hopkins University and elsewhere have indicated an interest in the research the group is undertaking.
The main purpose of the organization is to study and help individuals, families and others impacted by two rare genetic conditions affecting muscles called Freeman-Sheldon and Sheldon-Hall syndromes. These disorders limit the muscles’ ability to move well in joints of two or more body areas such as the hands, feet, and face—often giving a mask-like and whistling appearance. Impaired swallowing, vision, and hearing are also common effects of this condition. Poling indicates that this group is the only organization in the world dedicated to these conditions. FSRG also supports community health and peer education for related concerns such as cancer, heart disease, and tobacco prevention through it's Education Department's RAZE Crew, which meets at Buckhannon-Upshur High School.
The Freeman-Sheldon Research Group has received 501(c)(3) tax exemption status from the IRS. We hope that you will plan to give generously to this worthy cause.
BUCKHANNON, W.Va.---Wednesday, FSRG Secretary, MI Poling, announced the beginning of a donation drive, with the launching of a secure online donation system. 'We're excited about this, and it will make it a lot easier for our loyal supporters and others to help us to help others and advance our mission,' Poling said. Monetary donations have been accepted since April, but the addition of a secure online system just got finished this week, Poling reports.
FSRG has many unmet needs, Poling says, and donations are greatly needed. 'To put it in perspective, we need $20,000.00 just for a pulmonary function system that is required to produce credible data we can hang our hat on,' Poling explained. 'At this point, we simply do not have that; we're making $200-$500 purchases at a time. We're very thankful to be able to do that,' Poling continued.
To make a secure online donation, go to http://fsrgroup.org and click on the donation button. Donations may also be mailed to FSRG's Treasurer at the following address: Freeman-Sheldon Research Group, Inc., Gregory Sabak, 115 Birds Eye Drive, Morgantown, WV 26501. In-kind donations are also very welcome, and questions may be sent through FSRG's website Contact Us feature. More information about FSRG's specific needs will be available in the near future on their website.
BUCKHANNON, W.Va.---FSRG Secretary and Research Department Director MI Poling said Wednesday that she expected enrolment to begin momentarily in the organisation's first three studies. 'We're very excited to have gotten to this point... finally,' she said. FSRG has been plagued by a lack of funds, personnel health concerns, and related logistical problems, but it has overcome those in recent months to be ready to begin the studies and able to begin seeing patients onsite by the fall. 'We have made almost all purchases initially required, but we won't be able to do certain parts of one study until at least early fall,' Poling said and continued, 'but we are able to handle all other aspects immediately.' It's very gratifying that people have stood by us and believed in us through the time leading to this point, and I want to thank them all and express my heartfelt apology for the serious delays that have occurred at all levels within FSRG. It's been very difficult. Please understand, FSRG does not take our responsibility lightly.'
Shirley Ellen Flynn of South Charleston died March 28 at Hubbard Hospice House in Charleston. Mrs. Flynn was the mother of Freeman-Sheldon Research Group, Inc. Chief Chaplain and Ethics Officer, Rev. Mark W. Flynn.
The daughter of the late George Van Varick and Mabel Johnson Van Varick, Shirley was born September 21, 1932 in Paterson, N.J. As a teenager, she was the conference president of the Methodist Youth Fellowship in the Newark Conference. Before starting college, she worked for a time at her family’s business in Wayne, N.J.
She first came to W.Va. to attend W.Va. Wesleyan College. There she met and married the Rev. Dr. Donald L. Flynn, who was a professor of Christian Education and the director of the group ministry. Besides being a student and a faculty wife, Shirley was also a house mother. She completed a degree in Sociology at Wesleyan.
Shirley and Don left West Virginia in the fifties to serve in other conferences and then returned in 1968 when Don came to Morris Harvey College to serve as the director of counseling and testing. They lived in South Charleston with their three sons. During her five years in South Charleston, Shirley was active in First United Methodist Church and in the United Methodist Women’s unit there.
In 1973, Don was appointed to serve a 12-church charge in Tyler and Doddridge Counties. Shirley was very much a part of the ministry there. She directed many Vacation Bible Schools, including one at Alvy with 80 people in a one-room building. Don and Shirley then served the Webster Springs Charge. Shirley continued to be a big part of his ministry.
When Don was serving Central Church in Charleston in the early 80’s, Shirley served as a district officer and a conference officer in the United Methodist Women. After Don’s death in 1993, Shirley became part of the conference program staff. In this position she was responsible for missions. She made regular visits to the annual conference mission projects, she helped to obtain grants from the general church, and she helped to recruit leadership. She also promoted support of missionaries and church and community workers. In the last few years Shirley was an active member of First United Methodist Church in South Charleston.
Mrs. Flynn is survived by three sons and three daughters-in-law: the Rev. Mark Flynn and Judy of Lewisburg; Paul Flynn and Diane of Geneso, Ill.; and David Flynn and Tonya of South Charleston. She is also survived by six grandchildren: Rachel Flynn of Lewisburg; Rebecca Flynn of Arlington, Va.; Lydia and Karl Flynn of Geneseo, Ill.; and Kara and Emily Flynn of South Charleston. All of Shirley’s children and grandchildren are United Methodists. Mark is the superintendent of the Greenbrier District.
Mrs. Flynn was an active member of First United Methodist Church in South Charleston. The Rev. Tom Nolan will lead a worship service praising God for Mrs. Flynn’s life on Monday, April 2, at 11:00 A.M. at First United Methodist Church, 905 Glendale Ave., South Charleston, W.Va. A time of visitation with the Flynn family will be held at the church on Sunday 4:00 to 7:00 P.M. and on Monday from 10:00 to 11:00 A.M. A graveside service will be conducted at the Arbovale Cemetery in Pocahontas County, W.Va., on Tuesday at noon.
FSRG Secretary, MI Poling, announced Friday that there had been some 'very serious' health problems affecting the families of FSRG faculty, staff, and students, but Poling urged that FSRG would honour its obligation to help individuals, families, and others affected by FSS and related entities. Poling said, in a statement released late Friday night on Facebook, 'I want to deeply apologise to everyone for our gross inactivity. While these very serious health issues are continuing, we understand we have a responsibility to help the people affected by FSS, and we are working on a limited-operations contingency plan to allow us to begin helping you more effectively.' Poling said a statement giving more information about what to expect from this latest move would be released in the coming days but said these limited operations would resume before the New Year. FSRG staff remain hopefully optimistic that this will pave the way toward resuming full operations by spring or summer at the latest, but no official word has been given about a time-table for resuming full operations.
FSRG announced recently that eight organisation had primary listings and syndicated information from one organisation had reached many more organisations. The organisations with primary listings are as follows: National Organization for Rare Disorders (NORD), MinnesotaHelp.info, National Cleft & Craniofacial Awareness & Prevention Month (NCAPM), Canadian Directory of Genetic Support Groups, Genetic Alliance, Birth Defect Research for Children, Iowa COMPASS Disability Information & Referral, and most recently National Health Information Center (healthfinder.gov). As of 28 June, Google returned 87 'unique' results fo a search of FSRG's proper legal name. FSRG Secy. MI Poling said, 'This is a good sign and very encouraging--people are taking us seriously and putting our information out there so we can help more people.'
As part of FSRG's recently stepped-up visibility efforts, officers have been contacting targeted organisations specifically that may have had a listing for the former FSPSG, FSS, both, or other relevant information and asking them to list FSRG. They have also offered to develop specific information on FSS for each organisation and keep it up-to-date. Poling continued, 'There is a lot of inaccurate and out-right untrue information out there about FSS, and we need to correct that. We are putting a lot of effort into correcting this information void right now, having heard that this lack of correct information also seems to be confusing the medical professionals caring for patients, which could plausibility impede care. That's the last thing we want.'
FSRG Secretary, MI Poling, announced recently that FSRG had begun a new visibility initiative to designed to increase FSRG's web presence and spark interest from consumers and professionals. As part of the effort, FSRG academic and research faculty, staff, and students (AR-FSS) will be encouraged to create individual professional profiles in appropriate academic, research, and similar professional social networking platforms.
The project got kicked-off with the launch of a Facebook page, which at last count had 22 'Likes', and they have been able to find more people that are potentially interested in volunteering for research. This move was followed by the launch of profiles for Physiologist-in-Chief, RJ McCormick, on Research Crossroads, ResearchGate, Biomed Experts, and Linkedin. Research Crossroads promotes transparency for research funding by tracking and publishing grant awards researchers receive; it also includes networking features for end-users. ResearchGate is a Facebook-like platform for researchers, and BioMed Experts tracks scientific publications and allows end-users to network. Linkedin (NYSE: LNKD) is a social networking site for professionals; it permits use of limited free features, including creation of a profile, an abbreviated form of which is available to non-registered users through regular web search. Social networking features are also provided in the form of 'Connections'.
Poling, who is also McCormick's research student and is listed on all FSRG study protocols, also launched profiles on several social networking sites, including: NEXTBIO, TrialX, and BioPortfolio, all of which had listings for our studies with inforation having appearently been obtained from ClinicalTrials.gov. NEXTBIO and BioPortfolio seem similar in their function to help researchers find information based on their background and use it it creative ways. NEXTBIO Basic and BioPortfolio are free; BioPortfolio charges a fee for posting information. TrialX seems to have limited free functions and is mostly a fee-for-service site.
Poling also launched individual and organisation profiles on MedPedia, a wiki for medical information that adheres to standard medical writing code of ethics in terms of ethical disclosures, training, and similar points. MedPedia is co-sponsored by several leading academic and medical institutions, including: Harvard Medical School, Stanford School of Medicine, Berkeley School of Public Health, University of Michigan Medical School, and the U.K. National Health Service (NHS). According to Wikipedia, a part of WkiMedia, on whose software MedPedia runs, 'Medpedia is composed of three primary components: 1) a collaborative encyclopedia (also referred to as the "knowledge base"), 2) a Network & Directory for health professionals and organisations, [and] 3) Communities of Interest where medical professionals and non-professionals come together to discuss topics of interest. [...] Content is licensed under the Creative Commons Attribution-ShareAlike (CC-BY-SA) license.'
FSRG also deployed several new enterprise-level apps, said Poling. 'These apps, in addition to Core Google Apps and apps previously deployed from the Google Apps Marketplace, should help FSRG AR-FSS be more productive, organised, and effective, Poling said. Deployed apps, which are available only to AR-FSS through their domain account, include: Aviary Design Tools, Bookmarks, EchoSign Electronic Signature for Google Apps, Gantter Project, PresentOnlineNow, Rhino Accounting, SurveyMonkeyApp, TripIt, and Moderator (Google Labs).
FSRG does not have any financial or contractual with any company or other entity mentioned. The mention of any entity does imply a product recommendation or opinion. Product and platform decisions were based on objective, multi-criterion evaluation.
FSRG will re-launch the Discussion Forum. FSRG Secy., Mikaela Poling said, 'We knew there were problems with the host, but we were not aware of any impending concern. We had planned to move to in-house servers of Sabak Computer Services, who is donating technical services and support, for the Discussion Forum by the end of the year, but obviously, that date got moved up with this major data loss.' Poling continued, 'We are very sorry for any problems this may or will have caused to families, and we want them to know we are working diligently to fix this. We will build up a better, stronger, more stable, and secure system.' Poling did not give a re-launch date, but said key personnel would be out for the coming week and efforts would resume upon their return.
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