If you have found this page, chances are you have entered the world of Treacher Collins syndrome and related disorders. You may have arrived unexpectedly, as a birth parent of a child with Treacher Collins syndrome or a related condition. You may have arrived by choice as an adoptive parent, an affected adult, or a service provider. If you are a parent, your child may be very young, older or an adult. You may be at an early or later stage of understanding the meanings and feelings associated with having child with Treacher Collins Syndrome or a related condition. Whatever your experience with or interest in people with Treacher Collins syndrome and related conditions, we would like to welcome you and let you know something about the Treacher Collins Foundation.
HOW DO I CONTACT THE TREACHER COLLINS FOUNDATION?
To learn more about the TCF, contact our office in Vermont (listed below) and ask for information. Hope Charkins, M.S.W., the executive director, will respond to your call or letter. If you would like to participate in TCF, please fill out the form below and mail with your donation (check or money order, American dollars, only, please) to the Treacher Collins Foundation. If a donation is a burden to you at this time, omit and join with us anyway.
A suggested annual donation helps cover the costs of the newsletter:
___ Regular (family) $10.00
___ Agency (professional) $25.00
Enclosed is my gift to assist in the work of the Treacher Collins Foundation:
_____$50 _____$100 _____$250 _____ $500
All money received by TCF go to support the services provided to families and individuals with Treacher Collins Syndrome and related conditions.
Name:
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Address:
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Phone:
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I am a: ___ parent ___ individual ___ professional
Please send me information on: ___________________________________________
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TREACHER COLLINS FOUNDATION
P.O. Box 683
Norwich, VT 05055-0683
U.S.A.
WHAT IS TREACHER COLLINS SYNDROME?
Treacher Collins syndrome, also known as mandibulofacial dysostosis or Franceschetti-Klein syndrome, is a rare and very complex genetic condition involving underdevelopment of the structures of the head and face. The pattern of inheritance is autosomal dominant.
In 1995, investigators mapped the gene which causes Treacher Collins syndrome, "Treacle", to chromosome #5. Prenatal testing and postnatal diagnosis are available.
The physical features usually include: downslanting eyes; notches of the lower eyelids; broad mouth; prominent nose; small chin with a steep angle of the lower jaw; underdeveloped, malformed and/or prominent ears; and, "sideburns" (licks of hair extending in front of the ears.) A hearing loss, usually conductive, is frequently associated with this disorder. Breathing problems and eating difficulties may also be present. Other less frequent features include: cleft lip with or without cleft palate; cleft palate alone; heart defects; and strabismus.
Most people with Treacher Collins syndrome have normal development and intelligence and go to regular schools. Children and adults with Treacher Collins syndrome are usually normal individuals with some physical abnormalities of the face.
Early speech and language difficulties may require evaluations and therapies, and the use of hearing aids may be necessary. Reconstructive facial surgeries may also be recommended. Genetic counseling may be of benefit for patients and their families.
WHAT ARE SOME RELATED DISORDERS?
Symptoms of the following disorders can be similar to Treacher Collins syndrome:
* Nager Acrofacial Dysostosis
* Goldenhar-Gorlin syndrome
* Oral-Facial-Digital syndrome
* Juberg Hayward syndrome
* Pierre Robin sequence
WHAT IS THE TREACHER COLLINS FOUNDATION?
TCF is an organization of families, individuals, and professionals who are interested in developing and sharing knowledge and experience about Treacher Collins syndrome and related conditions. We are a not-for-profit organization recognized by the Internal Revenue Service (22-3153470), and are incorporated in the State of New Hampshire. We currently serve the United States and Canada.
WHAT DOES THE TREACHER COLLINS FOUNDATION DO?
Networking Opportunities
TCF recognizes the value of peer support. Networking families and individuals is the primary goal of TCF.
Newsletter
TCF compiles and distributes a newsletter with articles and information pertaining to Treacher Collins syndrome and related conditions.
June 2002 - The increase of email inquiries for information, plus the decrease in phone and postal mail requests has prompted the Treacher Collins Foundation to no longer make the Newletter available through postal mail.
Booklet, Bibliography, Library, and Vocabulary List
TCF provides a booklet on Treacher Collins syndrome which addresses the multi-disciplinary aspects of the syndrome genetics, reconstructive surgeries, speech/language/hearing, psychological, (what to expect). The bibliography is a listing of books, journal articles, videos, transcripts, and other materials about Treacher Collins syndrome. The library houses materials listed in the bibliography. The vocabulary list is a compilation of terminology specific to Treacher Collins syndrome, with easy-to-read definitions.
Resource and Referral Lists
TCF provides resource and referral lists directed towards the specific needs of people with Treacher Collins syndrome and related conditions. Referrals to craniofacial centers that provide a multi-disciplinary team approach by professionals with extensive practical experience working with patients with Treacher Collins syndrome are included.
PURPOSES:
TCF aims to:
* support, inform, and network families and individuals with Treacher Collins syndrome and related conditions;
* serve as a resource for current information about Treacher Collins syndrome and related conditions;
* provide medical, educational, and other service providers with information about Treacher Collins syndrome and related conditions and the needs of families and individuals;
* improve the level of understanding and acceptance by the general public of people who have facial difference;
* promote research activity aimed at improving the quality of life of persons with Treacher Collins Syndrome and related conditions
* plan, develop, and provide services aimed at the realization of these purposes.
NEW MATERIALS
In 1996, TCF introduced a new booklet on the nutrition, feeding and eating needs of a young child with Treacher Collins syndrome. In the same year, TCF released 6 specialty videos to supplement "Rare" Should Not Mean "Alone", which was produced in 1995. These videos provide information for both the lay and professional audiences about Treacher Collins syndrome and TCF. Specialty topics include: genetics, parents talking, adults talking about their lives, psycho/social implications, surgical creation of an ear, and early issues for children.