One article describes the non-surgical orthodontic treatment and a new anatomical finding in FBS. Three present clinical practice recommendations for anaesthesia in FBS, SHS, and DA3. Finally, a comprehensive review of FBS, the culmination of over a decade of intense academic and clinical effort, was published in an open-access journal, meaning that it is freely available. The authors wished to provide the widest possible access to promote the safe anaesthetic care of patients with this very rare and challenging craniofacial syndrome.

More publications are expected through the year and beyond.

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.

Sincerely,

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.

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.

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.

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.'