Dr. Harold Urschel III, 32°
National Holoprosencephaly Project
Texas Scottish Rite Hospital for Children
2222 Welborn Street, Dallas, Texas 75219

The Carter Centers across America offer help to patients with HPE.

Photo: Dr. Harold Urschel III, 32°, is pictured right with his wife Christi Carter Urschel, and their son, Chance.
My son, Chance, was born in 1996 with a neurological birth defect known as Holoprosencephaly (HPE). This condition affects my son's brain and motor system. HPE is caused when the fetal brain does not grow forward and divide as it should during early pregnancy. When Chance was diagnosed, our family's understanding of HPE was minimal. As I delved into the medical texts about HPE, I became frustrated that I couldn't find any optimistic conclusions or suggested treatments regarding what HPE meant to my son's well-being. Instead of being consumed by our feelings of helplessness, my wife, Christi Carter Urschel, and I made a commitment to creating hope for all HPE patients.

Traditionally, when a child is diagnosed with a neurological disease, the healthcare system focuses on treating only the child, rather than additionally "treating" the parents. My wife and I believe that if the parents of an HPE child can be given the correct information about the disease, treatments and therapy, they can more effectively coordinate and integrate the myriad of services and treatments that are necessary for an optimal outcome for their child.

Our crusade to find better treatments and a possible cure for this condition arose out of our love for Chance, but over time, we have met hundreds of families like ours who have needed a treatment facility—both for the patients and the rest of the family. In an effort to provide hope and answers to other families with HPE patients, we founded The Carter Centers for Brain Research in Holoprosencephaly and Related Malformations. The Carter Centers are strategically located across the United States in order to provide services to families across the country. There are Centers located at Texas Scottish Rite Hospital for Children–Dallas, Texas; Kennedy Krieger Institute–Baltimore, Maryland; Lucile Salter Packard Children's Hospital at Stanford–Palo Alto, California; Rutgers, The State University of New Jersey–Newark, New Jersey; and The National Institutes of Health–Bethesda, Maryland.

The Carter Centers comprise an international, multidisciplinary treatment and research consortium committed to searching for new breakthroughs to the challenging developmental disorder of HPE. With a mission to educate families and clinicians about HPE, stimulate research, devise better treatments and provide hope for all families with children diagnosed with HPE, The Carter Centers have become the foremost leaders in HPE research and treatment in the world.

To help us in this important endeavor, we have enlisted some of the greatest minds and most compassionate physicians and other healthcare providers to help us build and service The Carter Centers. In addition to clinical evaluation and treatment of the children, The Centers' staff has built an HPE parental educational information system so that parents of HPE patients can gain more hope, guidance, and insight into working with their children who have these significant developmental issues.
For additional support, all HPE patients and families, regardless of location, are free to use the program and services of the Christi Carter Urschel Family Resource Center at Texas Scottish Rite Hospital for Children. Created in 1998 to provide support and meet the needs of families who want to learn more about their child's situation and how to find more resources for treatment and care, the Family Resource Center aims to enable children to reach their fullest potential and improve their quality of life. The Family Resource Center library is a comprehensive resource that provides information from books, periodicals, brochures, videotapes, and electronic media.

Today, The Carter Centers continue to make significant strides in improving treatments and searching for a cure and have established specific areas of study in order to expedite these successes. These areas include genetics, cognitive development, neuroimaging, and rehabilitation therapy (speech, occupational, physical). Some of the research efforts involve developing assessment tools and treatments to assist patients and their families in enhancing communication and in stimulating patients' intellectual development. In addition, The Carter Centers are focusing on finding the specific gene defect causing HPE, as well as evaluating rehabilitation language and medication therapies to determine those most helpful to patients. Thus, it is our hope that this effort will one day allow my son and others like him to regain many lost functions and lead a healthier, happier life.

When Chance was diagnosed with HPE, my family's goal was to find some answers about HPE that did not reflect the overwhelmingly negative perspective of many within the medical community. We simply needed someone to tell us there was hope for our son's future. This goal soon grew to become an international mission to find a cure for HPE. With the establishment of The Carter Centers, new treatments and therapies have been developed to improve the quality of life for HPE patients and their families. All of these accomplishments indicate that a cure for HPE is on the horizon. Until then, we will continue to work together to discover HOPE in HPE.

For more information about HPE, The Carter Centers or to be added to the mailing list, please visit The Carter Centers Web site at http://www.stanford.edu/group/hpe or contact Nancy Clegg, R.N., Ph.D., National Holoprosencephaly Project Director, Texas Scottish Rite Hospital for Children, Department of Neurology, at hpe@tsrh.org or call her at 214–559–8411.

Editor's Note: The Carter Family has always supported the efforts of the Masonic philanthropies and has a longstanding relationship with Texas Scottish Rite Hospital for Children. Dr. Urschel is a 32° Mason, Chance's grandfather, Mr. Don Carter, is a 33° Mason, and Chance's uncle, Mr. Ron Carter, is a 32° Mason.