Please help Baylor University College of Medicine and Texas Children's Hospital with their study on the genetic origins of Goldenhar syndrome. Richard Alan Lewis, M.D., M.S. needs your help to keep this study alive. Blood samples and a medical history are required of you. Here is more information about what Dr. Lewis hopes to gain through this research.
"In the past two years, we at Baylor College of Medicine and Texas Children's Hospital have begun a genetic research program to look for the genetic cause(s) of Goldenhar Syndrome (also variously called Hemifacial Microsomia and Facio-Auriculo-Vertebral Spectrum). You may be aware that very little is known about the genetic explanation for these rare disorders, despite their variable effects on the eye, the ear, the face, the limbs and skeleton, and occasionally the kidney, among others. Also, these conditions vary widely from one family to another, so we expect that there is more than one genetic explanation for the same "diagnosis”, thus making the task of unraveling the true explanation(s) in any one family considerably more challenging! Many families have already had conventional genetic testing, which usually yields almost no useful information.
Since you as parents have an essential role in caring for, monitoring, and guiding the education of these children and young adults, I would appreciate most sincerely your joining us in this effort. Without your dedication and willingness, we cannot achieve the understanding that both the families and many scientists and physicians have wondered about for decades! There is no cost to any family for the detailed genetic analyses that will be done.
If you are interested in helping your child and in joining this research program, please contact me.
Please call my academic office at (713) 798-3030 or email me at [email protected].
If I am not in the office, please leave a voice mail with your name and a phone number for me to return your call. Also, please mention Goldenhar Syndrome or Hemifacial Microsomia in the message. I will call back and explain the details!
Thank you! Our team here is most eager to proceed with this unique and exceptionally important research program!"
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