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Welcome to VCFS Texas Incorporated

CHANGING LIVES - EMBRACING HOPE - RAISING AWARENESS

We are a not-for-profit organization dedicated to providing support and resources to individuals with Velo-Cardio-Facial-Syndrome (VCFS) / 22q, their families, professionals, and the community in Texas.

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Join the VCFS Texas /22q Yahoo Group to connect to other families living with VCFS /22q in Texas Stay up to date on VCFS information and resources

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VCFS Retreat

VCFS Texas Annual Retreat

VCFS Texas annual retreat for families affected by VCFS in Texas,

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Donate to VCFS Texas / 22q Today

VCFS Texas is looking for motivated individuals to help out for a great cause! Please contact us, and let us know your interests, and we will find perfect fit within our organization. Thank you.
*We are currently fundraising for our 2nd annual Retreat. The retreat brings families and professionals together in a fun and nurturing environment to learn more about the disorder and its treatment and to support one another as we struggle with this underdiagnosed, challenging genetic condition.
The purpose of VCFS Texas Inc. is to provide support and resources to individuals with Velo-Cardio-Facial Syndrome(VCFS) / 22q, their families, professionals, and the communityin Texas.
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Support VCFS Texas

Your generous support allows VCFS Texas is able to make a difference to families and people affected by VCFS. We welcome all levels of donation, and are privileged to put your gift into action.We are Currently fundraising for: -Annual Budget-VCFS Local Events-Annual Retreats VCFS Texas has already taken significant steps to support people affected by VCFS in Texas. We helped the Texas Legislature pass the first legislation in the country to increase awareness of VCFS Senate Bill 1612, passed in 2009, requires the states Early Childhood Intervention agency to provide information about VCFS to caseworkers and therapists working with children from 0-2 with developmental disabilities and to provide information to parents whose children have two or more symptoms associated with VCFS. Our organization has spoken and provided information to community groups, professionals and families throughout the state, including a large-scale mailing campaign to medical and educational professionals, as well as providing emotional support to numerous families. In May 2010, VCFS Texas successfully hosted the first ever Texas retreat for families affected by VCFS and parents and kids were thrilled to learn they are not alone. SincerelyDeborah Clarke TrejoPresident, VCFS Texas, Inc.

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About us

Our Mission

The purpose of VCFS Texas, Inc. is to provide support and resources to individuals with Velo-Cardio-Facial-Syndrome (VCFS) / 22q, their families, professionals, and the community in TexasVCFS TEXAS Inc. achieves its mission by :Increasing public awareness and understanding about VCFS.Creating a forum for the exchange of information, ideas and experiences related to VCFS.Improving the provision of services and supports to people with VCFS through governmental agencies, the medical and therapeutic community, educational institutions and non-profit organizations.Providing educational resources and support to parents and educators to ensure quality medical and therapeutic treatment for individuals with VCFS in accordance with up-to-date scientific research.Providing educational resources and support to parents and educators to ensure quality education which will prepare individuals with VCFS for further education, employment and independent living.Promoting the development of programs that enrich the lives or individuals with VCFS.
About VCFS

What is VCFS / 22q

Velocardiofacial syndrome (VCFS) / 22qalso known as 22q11.2 deletion syndrome, Shprintzen Syndrome and DiGeorge Syndrome or DiGeorge Sequence is caused by the deletion of a small segment of the long arm of chromosome 22 (specified as 22q11.2 deletion), and is one of the most common genetic disorders in humans- occurring in an estimated 1 in 2,000 births. Despite the involvement of a very specific portion of chromosome 22, there is great variation in the features of this syndrome. None of the problems occur in all cases. ________________________________________________________________________________________________________What causes Velo-cardio-facial syndrome?It is not known why this region of chromosome 22 is prone to become deleted, but this is one of the most frequent chromosome defects in newborns. Deletion 22q11.2 is estimated to occur in one in 3,000 to 4,000 live births. Most of the 22q11.2 deletion cases are new occurrences or sporadic (occurs by chance). However, in about 10 percent of families, the deletion is inherited and other family members are affected or at risk for passing this deletion to their children. The gene is autosomal dominant, therefore, any person who has this deletion has a 50 percent chance of passing the deletion to a child. For this reason, whenever a deletion is diagnosed, both parents are offered the opportunity to have their blood studied to look for this deletion. Approximately 10 percent of individuals who have the features Velo-cardio-facial syndrome (VCFS) do not have a deletion in the chromosome 22q11 region. Other chromosome defects have been associated with these features, as have maternal diabetes, fetal alcohol syndrome, and prenatal exposure to Accutane® (a medication for cystic acne).________________________________________________________________________________________________________ What are the features of Velo-cardio-facial syndrome? -palatal abnormalities (such as cleft lip and/or palate) - feeding difficulties -conotruncal heart defects (e.g., tetralogy of Fallot, interrupted aortic arch, ventricular septal defects, vascular rings) -hearing loss or abnormal ear exams -genitourinary anomalies (absent or malformed kidney) -hypocalcemia (low blood calcium levels) -microcephaly (small head) -IQs are generally in the 70 to 90 range -0psychiatric disorders in adults (e.g., schizophrenia, bipolar disorder) -severe immunologic dysfunction (an immune system which does not work properly due to abnormal T-cells, causing frequent infections these patients have true DiGeorge syndrome.* Information taken from the Velo Cardio Facial Syndrome Educational Foundation - VCFSEF.org
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Sketch Nuestra MisiónLa misión de VCFS Texas es proveer apoyo y recursos a individuos con síndrome velo cardio - facial (también conocido como síndrome de DiGeorge y síndrome de deleción 22q11.2), a sus familias, a los profesionales interesados en este padecimiento y a la comunidad de Texas en general. Nosotros podemos lograr este objetivo mediante la realización de las siguientes actividades:Incrementando el conocimiento y la comprensión del público acerca de VCFS.Creando un foro para el intercambio de información, ideas y experiencias relacionadas con VCFS.Mejorando los servicios y apoyos a la gente con VCFS, provistos por agencias gubernamentales, la comunidad médica, la comunidad de terapistas, las instituciones educacionales y las organizaciones no lucrativas.Aportando recursos educacionales y apoyo a los padres y educadores, con el fin de asegurar la calidad del tratamiento médico y de terapia para individuos con VCFS, de acuerdo con las más recientes investigaciones científicas.Aportando recursos educacionales y apoyo a los padres y educadores para asegurar la calidad de la educación, de tal manera que preparare a individuos con VCFS con el fin de que puedan acceder a una educación superior, un empleo digno y una vida independiente.________________________________________________________________________________________________________¿Con quién puedo hablar sobre VCFS en Texas?Deborah Trejo puede atender sus correos o llamadas sobre VCFS en Texas.Pueden ponerse en contacto con ella endtrejo_vcfstexas.com512-909-8359 por las noches o en el fin de semana________________________________________________________________________________________________________ Acerca de VCFS El síndrome velo-cardio-facial (también conocido como síndrome de DiGeorge) es causado por la deleción de un pequeño segmento del brazo largo del cromosoma 22 (especificada como deleción cromosómica 22q11.2) y es uno de los trastornos genéticos más comunes en humanos, con una incidencia aproximada de 1 en 2000 nacidos vivos. Existe gran variación en las características del síndrome y no todos los problemas ocurren en cada caso. La lista de anomalías incluye: fisura del paladar, normalmente del velo del paladar (o paladar blando, el techo de la boca más cercano de la garganta, situado detrás del paladar óseo o paladar duro), problemas cardiacos, facies característica (cara alargada, ojos con forma de almendra, nariz ancha y oídos pequeños), trastornos de aprendizaje, retrasos del desarrollo, problemas de conducta y psiquiátricos, trastornos oculares, problemas de alimentación que incluyen que el alimento salga por la nariz (regurgitación, que es diferente del reflujo) debido a la fisura del paladar, infecciones de oído medio, hipoparatiroidismo (niveles bajos de hormona paratiroidea) que puede ocasionar crisis convulsivas, problemas del sistema inmune, que pueden ocasionar que sea más difícil para el organismo controlar infecciones, músculos débiles, talla baja, curvatura de la columna vertebral (escoliosis), dedos delgados en las puntas (Fuente: NIH, VCFSEF).________________________________________________________________________________________________________ Progreso Actual Existen múltiples investigaciones científicas que se están llevando a cabo actualmente sobre este síndrome, incluyendo la evaluación de las necesidades especiales de personas con VCFS en las áreas del habla, la salud, la conducta y el procesamiento cognitivo. Los resultados de estas investigaciones pueden permitir a los padres y a los profesionales relacionados, ayudar a la gente con VCFS a poder alcanzar su máximo potencial.Es muy importante que los padres de niños con VCFS cuenten con los recursos disponibles, tanto para apoyar a sus hijos, así como recibir apoyo de otros padres que han enfrentado las mismas situaciones________________________________________________________________________________________________________ Información general sobre VCFS http://vcfsef.org/non_english/spanish.htmlGuia para padres sobre la delecion 22q11.2NICHCY es la sigla del Centro Nacional de Diseminación de Información para Niños con Discapacidades
Local Support Groups Austin Area VCFS / 22q Support GroupContact InformationDeborah Trejo(se habla espanol)e-mail: DTrejo_kempsmith.comphone: 512-909-8359Courtney Helforde-mail :courtneyhelford_yahoo.comphone: 512-332-0368 / 512-304-5669

Dallas / Fort Worth Area VCFS / 22q Support GroupContact InformationAshli Cheung214.731.9393e-mail: acheung_vcfstexas.comKeri Alexandere-mail: skalex1_tx.rr.com

Houston Area VCFW Support GroupContact InformationMegan Wawarofskyphone: 832-630-9918e-mail: mwawarofsky_yahoo.com
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Velo-Cardio- Facial-Syndrome (VCFS) Educational Foundation, Inc.

The Foundation is an international not-for-profit organization dedicated to providing support and information to individuals who are affected by Velo-Cardio-Facial syndrome, their families, physicians and other practitioners.

22Q Central - Care to be aware

22q Central is a 501(c)(3) non-profit organization with the goal of promoting awareness and education regarding a common, yet many times overlooked, genetic disorder known as 22q11.2 Deletion Disorder, DiGeorge Syndrome, VCFS (velo-cardio-facial syndrome) and others. Parents

22Q The International 22q11.2 Deletion Syndrome Foundation, Inc. (Music)

22q is a non-profit organization that was founded by parents in an effort to bring awareness and support for this rare and under recognized condition. The organization is built on the belief that through identification, appropriate treatment, research and education there can be a better quality of life for those living with this condition and their families, improved medical care for patients with this condition and one day a cure for the 22q11.2 deletion.

books

books Velo-Cardio-Facial Syndrome, volume 1 by Robert J. Shprintzen and Karen J. Golding-Kushner (Plural Publishing, 2008)Velo-Cardio-Facial Syndrome, volume1 is a comprehensive text describing the full range of clinical findings associated with VCFS. The text is accompanied by a DVD that contains 19 videos that compliment the text and more than 110 figures, many in color, including growth charts specific to VCFS. Chapter 1 details the history of VCFS, its delineation, and the current interest in this important syndrome. Chapter 2 details the phenotypic spectrum of VCFS, detailing 190 clinical features of the syndrome with 72 figures associated with the written descriptions. Chapter 3 discusses the genetics of VCFS in straightforward and simple language that is suitable for all readers. Included in Chapter 3 is a description of how the deletion occurs and why it can account for the expansive clinical spectrum. Chapter 4 is a guide for the clinical management of VCFS including triage systems that are specific to the natural history of the syndrome. Chapter 5 provides an important discussion of growth, weight gain, and feeding in VCFS and includes the first growth chart specific to the syndrome. Feeding techniques are discussed, as are the reasons for feeding difficulties in VCFS. The aim of this chapter is to avoid stress and medical dependency that can be better understood based on the growth curves provided.Velo-cardio-facial Syndrome volume 2: Treatment of Communication Disorders by Karen J. Golding-Kushner and Robert J. Shprintzen (Plural Publishing, 2011)Volume II of this set opens with information of aspects of speech and language and the difficulties most often associated with VCFS. Authors also consider how these difficulties interact with each other. Chapter two describes the aspects of articulation and resonance, how they are best evaluated, and on surgical management. In Chapter three, general principles are outlined on how to make articulation therapy successful for children with cleft palate, VCFS, or both, many of which apply to language therapy and other behaviors, as well. The last chapter offers insights into prevention of the abnormal articulation patterns that tend to develop and how to guide children through stages of language development.Therapy Techniques for Cleft Palate Speech and Related Disorders, A book focusing on the treatment of speech disorders associated with VCFS is available from Amazon and other sources. Authored by Karen J. Golding-Kushner, Ph.D., the volume book is the outcome of a meeting by a consensus panel of the leading experts in treating these disorders. That meeting was supported in part by a grant from the Educational Foundation in response to the recognized need for a book that detailed speech therapy approaches in children with VCFS. There is one entire chapter devoted specifically to VCFS and similar genetic disorders. Available from Amazon for approximately $65.00.MISSING GENETIC PIECES: Strategies for Living with VCFS, The Chromosome 22q11 Deletion", written by Ms. Sherry Gomez of Arizona: A comprehensive HANDBOOK for Parents, Professionals and Anyone wanting to know about Chromosome 22 Deletion (22q11) and its dynamics. Note: A portion of the proceeds from this book is being donated to the VCFS Educational Foundation, Inc.Practical Handbook for Educating Children with Velo-Cardio-Facial Syndrome and Other Developmental Disabilities by Donna Landsman, the person who has lectured more about education and VCFS than any other person in the world. Available on advance order from Amazon.com for $55.00.Velo-cardio-facial Syndrome: A Model for Understanding Microdeletion Disorders, Edited by Kieran C. Murphy Education and Research Centre, Royal College of Surgeons of Ireland, Peter J. Scambler Institute of Child Health, University College London.A Different Life: Growing Up Learning Disabled and Other Adventures by Quinn BradleeBorn With a Hole in His Heart, Quinn Bradlee suffered from a battery of illnesses-seizures, migraines, fevers-from an early age. But it wasn't until he was fourteen that Bradlee was correctly diagnosed with Velo-Cardio-Facial Syndrome (VCFS), a wide-spread, little-understood disorder that causes a range of physical ailments and learning disabilities.

Clinics and Research Velo-Cardio- Facial-Syndrome (VCFS) International Center - Upstate NY"The Center coordinates care for every patient with personal attention that is unparalleled anywhere. There is ample opportunity for the review of treatment plans and discussion of long and short term approaches to care. However, care does not stop once the patient leaves the offices of the Center. The Center prides itself on a system of Distance Care."The Children's Hospital of Philadelphia - The 22q and You Center"At The "22q and You" Center established in 1996 our goal is to provide the finest diagnosis, treatment and follow-up services to these children and their families. We also continue to lead the way in researching 22q11.2 deletion, hoping to find out more about what causes it, how it affects children and how we can make their lives even better"The Southeastern Regional Center of Excellence for 22qWelcome to the Southeastern Regional Center of Excellence for 22q in Atlanta, Georgia. We created our center to serve patients and families with 22q11 deletion syndrome, as well as those healthcare providers who are involved in the care of these individuals. Our primary goal is to learn more about this condition by conducting cutting-edge research to promote excellence in treatment for 22q. Our center offers the best possible clinical care for patients with this condition as well as comprehensive education for patients and professionals alike.UC Davis MIND Institute Chromosome 22q11.2 DS Educational Videos and Research at CABILCenter for Excellence in Developmental Disabilities (CEDD) at the UC Davis MIND Institute, and Tony J. Simon, Ph.D., Director of the Cognitive Analysis and Brain Imaging Lab

Support

VCFS22q Networks VCFS Texas Yahoo GroupVCFS Texas Facebook GroupDempster Foundation Texas 22q Facebook GroupAdults with VCFS - 22q deletion - Facebook groupAdults Living with VCFS - Yahoo GroupsFor Adults living with VCFS/DiGeorge syndrome. I am 33 yrs old just found out that I have this syndrome this spring. This Group is for other's with VCFS/DGS to come and talk about daily struggles of living with DiGeorge Syndrome. We also have sister group at:22q11syndromefor2ormoreaffected_yahoogroup.comand 22q_exchange_yahoogroup.comVCFS - Knowledge is Hope Facebook groupFriends of QuinnWhere Learning Disabilities meet support22q Exchange - Yahoo GroupsThis is a support group for families and individuals dealing with the challenges of 22q Deletion Syndrome (also know as 22q11 Deletion Syndrome, DiGeorge Syndrome or VCFS). This syndrome affects people in a wide variety of ways and we recognize the need to allow people to connect with and support each other. Therefore, we encourage open, respectful communications on all aspects of this condition.I have 22q....You? - MacKenzies Story - Facebook group

Special Needs Advocacy, Inc.http://www.advocacyinc.org/index.cfmAustin Travis County Integral Care Behaviour Health and Developmental Disabilities ServicesAustin Travis County Integral Care is provides community-based behavioral health and developmental disabilities in Travis County, administering an annual budget of $50 million of local, state and federal funding at 44 physical facilities. In the last year, Integral Care served more than 22,000 individuals and families, offering numerous services and programs year-round.Department of Aging and Disability Services (DADS)http://www.dads.state.tx.us/Find Services for you, your family, or someone you are caring for.Department of Assitive and Rehabilitive Services (DARS)http://www.dars.state.tx.us/Find ServicesEarly Childhood Intervention Services (ECI)ECI is a statewide program for families with children, birth to three, with disabilities and developmental delays. ECI supports families to help their children reach their potential through developmental services. Services are provided by a variety of local agencies and organizations across Texas.http://www.dars.state.tx.us/ecis/index.shtmlELWYNElwyn is a non-profit human services organization recognized nationally and internationally as experts in the education and care of individuals with special challenges and disadvantages. Founded in 1852 to care for children with intellectual disabilities, todays Elwyn is a leading provider of services for people with special needs of all ages. While many of our services are available at our original 400-acre site in Media, PA, Elwyn also supports programs in schools, community sites, workplaces, and individual homes in Pennsylvania, Delaware, New Jersey, and CaliforniaSpecial Olympics of TexasThe mission of Special Olympics Texas is to provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities [mental retardation], giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in the sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community.

Education and Learning VCFS Educational Foundation - Working with Schools to Help Your Child with VCFSManaging the educational maze can be one of the most frustrating aspects of raising a child with special needs. In the U.S., federal and state laws regulate what school districts are obligated to do, even though shrinking school budgets make it difficult to provide students with maximal levels of service. Schools will often opt for the least expensive alternative, even though it may not be the "best" program. However, parents who are educated regarding the unique needs of children with VCFS, the laws which protect them, and the educational programs which are effective can succeed in increasing the assistance given their child. Children with VCFS can learn and improve their school performance, but parents must be informed advocates for their child's right to an appropriate education.Educational Issues for children with Chromosome 22q11.2 deletion - Cheryl DulzPdf FileUC Davis M.I.N.D. Institute Educational VideosGeneral Suggestions for helping 22q DS children to learn 22 crew

Texas Doctors and Medical

Austin
Dallas
Houston

Austin The Doctors listed below have been recommended by VCFS Texas members as doctors that are knowledgable about VCFS/22q in the Dallas Forth Worth Area

Dallas The Doctors listed below have been recommended by VCFS Texas members as doctors that are knowledgable about VCFS/22q in the Dallas Forth Worth Area

Houston The Doctors listed below have been recommended by VCFS Texas members as doctors that are knowledgable about VCFS/22q in the Houston area.

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VCFS 22q Texas T-shirt

VCFS Texas Retreat

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Special Thanks to Linda Alviar Photography

VCFS Texas (22q Texas) hosted the second annual retreat for Texas families affected by Velo-cardio-facial (DiGeorge or 22q11.2 deletion) syndrome at the WONDERFUL Peaceable Kingdom Retreat Labor Day Weekend, Friday Sept. 2nd- Sunday, Sept. 4th near Killeen, Texas on the Lampasas River. The retreat brings families and professionals together in a fun and nurturing environment to learn more about the disorder and its treatment and to support one another as we struggle with this underdiagnosed, challenging genetic condition. The retreat included informative sessions, opportunities to meet with and share information and experiences with other families, opportunities for fun, games (swimming, fishing, movies, campfire and more are planned) and relaxation in a BEAUTIFUL Texas Hill Country setting. Lodging in charming group cabins (with water, electricity, bedding, kitchens, etc.) as well as all meals and activities are being provided at no cost to families due to the fundraising efforts of VCFS Texas!
Sponsers

A Special Thank You to our Sponsers and Friends that helped make the 2011 VCFS Texas Retreat a success!

Linda alviar Photography for the beautiful photographs

Johnny rodriguez - Vice President Local Union 540 UFCW for the food, drinks and snacks

The Maldonado Family- for donating food and snacks for the VCFS families

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