Mission
The National Foundation for Syndactyly Research, Support, and Education is a charitable, tax-exempt, 501(c)(3) organization organized to fund research, support, and education. The foundation serves as a resource to connect families touched by Syndactyly and other related hand abnormalities with other families, facilities for treatment, and board certified hand physicians who specialize in Syndactyly treatment. We provide research grants to investigate the causes and best practices in treatment as funding permits.
Vision
The National Foundation for Syndactyly will be a recognized leader among health-related nonprofit organizations and will be known for its family and facility support connecting those touched by Syndactyly to have future generations benefit from early diagnosis and care, and for spearheading research through grants that investigate causes, prevention and best practices in treatment.
History
The National Foundation for Syndactyly Research, Support, and Education was organized to help fund research into the causes and prevention of Syndactyly. Despite the advances in modern medicine, little if any research funding is dedicated to Syndactyly largely because it is not a life threatening affliction. It is however, a fairly common congenital defect that has no known preventative measures, and is only treated today by surgical intervention. Children afflicted by the birth defect must often undergo complicated and potentially but not normally life threatening surgery at very early ages to give the child a chance at full function when the condition is Syndactyly of the hand. It is believed that at least half those children must undergo additional complicated surgeries to keep up with the growth of the hand.
If your child has syndactyly, it means that his fingers and/or toes are webbed or joined, and that the condition was present at birth. It is a condition the child will have for life and they often are the subject of ridicule by other children that can lead to low self esteem. The condition is believed to occur in approximately one out of 2,500-3,000 newborns, affects both hands about 50 percent of the time, and most often occurs between the middle and ring fingers. However, there is no known database to accurately tract the occurrence. Unfortunately, the condition is reported to occur in isolation and sporadically and for no identifiable reason. It has also believed to be linked to some genetic syndromes and it may well be an inherited trait. Some physicians believe it may be caused by protein deficiencies. Dedicated research is needed to more accurately tract and determine causes and possible preventative measures.
Syndactyly can sometimes be detected by prenatal ultrasound, and is apparent at birth. The underlying structure of the fingers and the course for treatment are determined by physicians. All but the mildest forms of Syndactyly are currently treated by surgery. Surgery can range from being fairly straight forward to very complex. Elective surgery is always dangerous as are the techniques and procedures used. Skins graphs are very common with Syndactyly as there is normally not enough skin to cover the fingers when released.
The organization believes at least 50 percent of the funding for the goals and objectives will be through charitable donations of families afflicted by Syndactyly and the other 50 percent by fund raising efforts of the organization. Our first objective is to connect families touched by Syndactyly to other families and leading hospitals and board certified hand physicians. The foundation will also establish a Scientific Advisory Committee to connect with leading Universities, Children Hospitals and Board Certified Hand Surgeons internationally who are focused on research into the causes and best intervention practices to direct the funding to worthy research endeavors through funding grants of the organization as funds permit.
The National Foundation for Syndactyly Research, Support, and Education was founded in 2012 by Linwood and Karen Gray who, as parents, were touched by Syndactyly in 1979 with the birth of their son and again in 2012 with the birth of their grandson.
Board of Directors
Linwood N. Gray (Woody)
Current President & Founder
Email Woody Gray
Woody is the Resident Director and Senior Financial Advisor for Merrill Lynch Wealth Management in Swansea, Illinois. He earned his Bachelors degree in Business Administration and Economics from Rollins College, and his Masters degree in Executive Development with a concentration in Finance from Ball State University. Woody is a retired USAF Lt. Colonel with more than 26 years of military service and is a former Squadron Commander of the 375th Operations Support Squadron. He served many worthy childrens charities in a variety of positions over the years including fund raising for St. Judes Children’s Hospital and Cardinal Glennon Children’s Hospital. Woody and his wife Karen founded NFS with the help of Dr. Charles A. Goldfarb, M.D. and other caring individuals, many serving NFS in various positions today. Woody’s son Zachary and his grandson Nile were both born with complex Syndactyly.
Roles and Responsibilities
- Oversees board and executive council meetings
- Works in partnership with the chief executive to make sure board resolutions are carried out
- Calls special meetings if necessary
- Appoints all council chairs, and with the chief executive, recommends who will serve on councils
- Assists chief executive in preparing agenda for board meetings
- Assists chief executive in conducting new board member orientation
- Oversees searches for a new chief executive
- Coordinates chief executive’s annual performance evaluation
- Works with the governance committee to recruit new board members
- Acts as a spokesperson for the organization
- Periodically consults with board members on their roles and helps them assess their performance
- Acts in the absence of a chief executive or until one is hired
Brent C. Bergheger
Current Vice-President
Email Brent Bergheger
Brent is the principal owner of Brent Bergheger Chrysler, Dodge, and Jeep Dealership. He earned his Bachelors degree in Business Administration from Southern Illinois University Edwardsville (SIUE). Brent is the Executive Director of the annual Brent Bergheger Golf Tournament fund-raising event for Children’s Hospital, St Louis, Missouri and the Wounded Warrior Project Run/Walk. He has organized and served many worthy charities in a variety of positions over the years and currently is serving as a Director for First Federal Savings and Loan in Mascoutah, Illinois.
Roles and Responsibilities
- Attends all board meetings
- Serves on the executive committee if one exists
- Carries out special assignments as requested by the board chair
- Understands the responsibilities of the board chair and is able to perform these duties in the chair’s absence
- Participates as a vital part of the board leadership
Karen Gray
Current Secretary
Email Karen Gray
Karen is a mother of three, one touched by Syndactyly in 1979. Later she again was touched by Syndactyly with the birth of her first Grandchild. Karen knows first hand what parents and grandparents experience when touched by Syndactyly. Karen’s career and work experience includes banking and small business management and operations. She was elected to the Board as Secretary in 2016. Karen supports many worthy charities and has volunteered at the Annual Metro East Golf Classic Fundraiser since its inception. Her time and expertise in banking ad accounting will serve her well in her new position as management.
Roles and Responsibilities
- Attends all board meetings
- Serves on the executive committee if one exists
- Ensures the safety and accuracy of all board record
- Reviews board minutes
- Assumes responsibilities of the chair in the absence of the board chair, chair-elect, and vice chair
- Provides notice of meetings of the board and/or of a council when such notice is required
Tim A. Boyce
Current Treasurer
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Tim is the Managing Member of Boyce, Hund & Associates, LLC in Mascoutah, Illinois. Tim earned his Bachelors degree in Accounting from The University of Illinois, Champaign. He also has specialty education in accounting and investment management and has has more than 30 years accounting and financial industry experience. He has organized and served many worthy charities in a variety of positions over the years and currently is serving as a Director for Citizens Community Bank.
Roles and Responsibilities
- Attends all board meetings
- Maintains knowledge of the organization and personal commitment to its goals and objectives
- Understands financial accounting for nonprofit organizations
- Serves as the chair of the finance committee if one exists
- Manages, with the finance committee, the board’s review of and action related to the board’s financial responsibilities
- Works with the chief executive and the chief financial officer to ensure that appropriate financial reports are made available to the board on a timely basis
- Presents the annual budget to the board for approval
- Reviews the annual audit and answers board members’ questions about the audit
Kelly Meyer
Family at Large Member
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Kelly is a mother of two, one touched by Syndactyly. Kelly is a Purchasing Agent at Midwest Elevator, lives in St Louis Missouri and was appointed to the NFS Board in 2015. She earned her Bachelors degree in Communications from the University of Missouri, St Louis. Kelly supports many worthy charities in a variety of ways and was solicited to fill the first Family Member at Large position on the Board.>Kelly’s role is to bring the perspective of a family member to the board and to help create family support and education initiatives.
Roles and Responsibilities
- Attends all board meetings
- Ensures the perspective of a family member is considered in board meetings
- Helps create Family Support and Educational Initiatives
- Serves on the committee for the annual conference
Medical & Scientific Advisory
Charles Goldfarb
Chairperson
Dr Goldfarb was the 2010 founding physician, a member of the NFS Board, and currently chairs the NFS Medical and Scientific Advisory Committee. Through Washington University in St Louis, Dr Goldfarb is conducting NFS funded research on Syndactyly analyzing previous treated outcomes, prospectively desired outcomes, and studying new treatment capabilities that may well replace skin grafts. His research focuses on the natural history and treatment outcomes of a variety of birth anomalies of the hand and upper extremity. Together with Drs Bae and Wall ,a prospective database has been created to allow a careful assessment and followup of children born with a variety of anomalies including syndactyly.
- Board Certified in Orthopaedic Surgery
- St Louis Children’s Hospital, Shriners Hospital For Children St Louis
- Professor in Orthopaedic Surgery, Washington Medical School
- https://wuphysicians.wustl.edu/for-patients/find-a-physician/charles-a-goldfarb
Donald Bae
Dr Bae’s involvement dates back to 2012 and he joined NFS as a member of the NFS Medical and Scientific Advisory Committee in 2016. He specializes in Pediatric Hand Surgery and Orthopaedic Sports Medicine. Through Harvard Medical School, Dr Bae conducts clinical research and has published research in all aspects of pediatric hand and upper extremity surgery. In conjunction with Drs. Goldfarb and Wall, he has created a prospective database to help children with congenital hand and upper limb differences, including syndactyly.
- Board Certified in Orthopaedic Surgery
- Boston Children’s Hospital
- Associate Professor in Orthopaedic Surgery, Harvard Medical School
- http://www.childrenshospital.org/doctors/donald-bae
Lindley Wall
Dr Wall’s involvement with NFS dates back to 2012 and she joined NFS as a member of the NFS Medical and Scientific Committee in 2016. Through Washington University in St Louis, Dr Wall also participates in conducting NFS funded research on Syndactyly analyzing previous treated outcomes, prospectively desired outcomes, and studying new treatment capabilities that may replace skin grafts. Her research focuses on the care and treatment of traumatic and congenital conditions of the pediatric hand and upper extremity. Together with Drs Goldfarb and Bae, a prospective database has been created to allow a careful assessment and followup of children born with a variety of anomalies including syndactyly.
- Board Certified in Orthopaedic Surgery
- St Louis Children’s Hospital, Shriners Hospital for Children St Louis
- Associate Professor in Orthopaedic Surgery, Washington Medical School
- http://www.ortho.wustl.edu/content/Patient-Care/3331/FIND-A-PHYSICIAN/Physician-Directory/Lindley-Wall-MD/Bio.aspx
Staff
Linwood N. Gray
Director
Email Linwood Gray
Cynthia A. Stevens (Candy)
Family Support Coordinator
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Partners
Rick Ortiz
Web Design and Marketing
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Edna Ditch
Record Printing
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Funding
Donations are specifically earmarked for Research. Fund Raising supports administrative expenses.
Media
Click here to view the Foundation’s Press Releases as they are published.