GOALS
Research is one pillar of the National Foundation for Syndactyly Research, Support, and Education. Our goal is to support the advancement of the understanding of Syndactyly, ultimately seeking ways to minimize its effects and hopefully to find a cure.
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 surgery. Children afflicted by the birth defect must often undergo complicated and potentially 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 the causes and possible preventative measures.
GRANTS
Annually, as our fund-raising allows, we offer competitive grants to other Scientists, Universities, and Physicians who also seek progress in the understanding and treatment of Syndactyly and other hand related abnormalities. The Scientific Advisory Council reviews applications for funding research and makes recommendations to the Board of Directors for grant funding. Proposals for grants may be submit to The National Foundation for Syndactyly Scientific Advisory Council by July 1 each year. Approved awards are funded each September.
Click here to review the 2017 update from Dr. Charles Goldfarb, MD.
The National Foundation for Syndactyly is unable to pay overhead or indirect costs to grantee organizations.
Download Grant Application Guidelines
Annually as our funding allows, we offer competitive grants to other scientists, universities and physicians who also seek progress in the understanding and treatment of Syndactyly and other hand related abnormalities. We have provided a document outlining how to apply for a research grant below.
Grant submissions are due by July 1 and funded awards are announced each September.
CLICK HERE TO BEGIN DOWNLOADFor More Information :
Contact director@nfsus.org or write to:
The National Foundation for Syndactyly
Attn: Research Grant Committee
P.O. Box 159
42 West Main Street
Mascoutah, Illinois 62258
Current Research
2015 – 2020 Washington University St Louis – Dr. Charles Goldfarb
Study of Syndactyly Outcomes, Prospective Patient Treatment , and New Treatment Capabilities.
Past Research
The National Foundation for Syndactyly was founded in December of 2010 and funded the first of many to come research grants in 2015.