Many families of children with genetic conditions or special needs search to find current and accurate information. We recognized this growing need and with the full support of Dr. Art Beaudet and in 2006 the Evenings with Genetics seminar series was developed.
The seminars are sponsored by the Genetics Service at Texas Children’s Hospital and the Department of Molecular and Human Genetics at Baylor College of Medicine. The goal is to provide current information for families of children affected with a genetic condition, increase community knowledge of genetic care and research issues, aid in family to family support and foster increased understanding and collaboration amongst geneticists, related medical specialists and care providers. This is the only ongoing series addressing genetic topics for the community in the U.S. and is possible thanks to the many Texas Children’s geneticists who share their expertise using terms that all can understand.
Topics for the seminars are based on common genetic diseases, requests by families or a new understanding of the pediatric or adult condition. Examples include updates in the care and research for those with Autism Spectrum Disorders, Marfan and 22q11.2 deletion Syndromes, seizures and epilepsy in addition to dental care for children with developmental disabilities, puberty and sexuality for teens with developmental disabilities. Many seminars are recorded and available at www.bcm.edu/eveninggenetics
Genetics doctors and counselors as well as other invited specialists speak at each seminar. Family speakers share their stories and messages of hope and bridge the gap between medical understanding and the real world implications of living with a genetic condition. Simultaneous translation to Spanish is provided thanks to the Texas Children’s interpreters who volunteer their time.
The audience has grown from parents, grandparents to other caregivers, teachers, physicians, nurses, social workers, medical, nursing and genetic counseling students and medical interpreters. Families from around the state and U.S. have attended the seminars.
What has really driven this series forward is the community’s positive feedback:
“This was such a good topic and more helpful than I can express. These resources have already shown to be helpful! As a parent I can not thank you enough for this more than valuable resource you are providing. “
“Great research which shines a new light on ways to find genetic diseases, and what most important, ways to manage those diseases”
“I can’t thank you enough for helping me to discover other avenues to explore in hopes of bettering my child’s future quality of life.”
From 2009 to present, funding has been awarded by the Texas Department of State Health Services and seminars are offered in Amarillo, Austin, Beaumont, Brownsville, El Paso, Laredo, Mc Allen, Midland, San Antonio and Tyler. Simultaneous translation to Spanish has been provided by local medical interpreters.
Comments have included: “Continue to provide this type of information in our community through any avenue possible”.
In total, this series has provided 153 seminars over the past 10 years with a total of 11,626 attendees.
We invite you to join us for the 10 Year Celebration on Tuesday, Jan. 19, 2016 from 6:30-8:30 pm at the The Health Museum. It will be a special evening with Drs. Arthur Beaudet and Brendan Lee, both internationally acclaimed genetics doctors at Texas Children’s Hospital as well as Professors at Baylor College of Medicine. Dr. Beaudet is the immediate past chair of the Department of Molecular and Human Genetics and Dr. Lee is the current Robert and Janice McNair Endowed Chair. They will discuss “Can Genetic Testing Lead to Better Health Care? Perspective and Insight from Leaders in Genomic Medicine” beginning at 7:00 pm.
Registration required, seating is limited, the seminar is free: www.bcm.edu/eveninggenetics Or call 832-822-4182.
To learn more visit, Texas Children’s Evening With Genetics