About the Carters
My name is Hal Urschel III, MD, and my son was diagnosed with Holoprosencephaly (HPE). Twenty years ago upon learning that our son, Chance, had HPE and after a great deal of research and time spent canvasing the medical literature on HPE, my wife and I found that all of the medical information was 'doom and gloom,' in regards to our son's prognosis. In reality, as a physician I understood that these articles are written only about the worst cases. As parents though, we wanted to find and hear that there was hope for our son and our family for the future. We found that hope in working with the doctors and staff at each of our clinical centers and affiliate research institutions. During our search to understand what HPE means and the search for the best treatments for our son, we discovered that when a child is diagnosed with a neurological disease, that the health care system focuses on treating only the child, rather than additionally 'treating' the parents, as well. My wife and I believe that if the parents of a HPE child can be given the correct information about the disease, treatments and therapy, then they can more effectively coordinate and integrate the myriad services and treatments that are necessary for an optimal outcome for their child.
I believe that we can find new and effective treatments for HPE patients, by creating an international, multidisciplinary treatment and research consortium, focusing on searching for new breakthroughs to this challenging developmental disorder. With God's help and through a set of fortuitous circumstances, we have created such a clinical research and treatment initiative, The Carter Centers for Brain Research in HPE and Related Malformations. To help us in this endeavor, we have enlisted some of the greatest minds and most compassionate physicians and other health care providers to help us build and service it. Please indulge me a few moments, in order to describe in more detail the goals and opportunities of these Centers.
My wife's family (Don and Linda Carter) and I have set up a foundation to fully fund the start-up services of this initiative, in order to improve the lives of children that have been diagnosed with Holoprosencephaly (HPE) and their families. More specifically, the Foundation's mission is to encourage the development of better treatments and to find the causes of and devise prevention strategies for HPE and its related disorders of brain cell plasticity. Simultaneously, we will work to find ways of promoting and enhancing mechanisms of neuronal recovery and brain development in the HPE patients. Our foundation is working to attain these goals by supporting the research efforts of and encouraging collaboration among investigators in the field of Pediatric Neurology, Developmental Pediatrics and related disciplines. (Ideally, The Fund hopes through its medical research efforts, to facilitate the development of 'gene therapy' as a reality for children with HPE)
The Foundation is supporting research between various research and treatment centers, in order to develop a new collaborative research field specializing in Neurobiological systems. This strategy brings clinical professionals together with research scientists and neurobiologists, in order to develop new Neurobiological treatments for HPE and related disorders, specifically for children. The strategy for finding new treatments for this illness is unique in that clinicians and researchers at all of the participating centers are working together and sharing resources and information, in order to help each other make more progress more quickly.
Additionally, the Center's staff is building a 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.
In order to financially support this international collaborative venture, we have created the Carter Chancellor Urschel Neurobiology Research Fund (CCUNRF), whose purpose is to improve the lives of children that have been diagnosed with Holoprosencephaly (HPE) and their families. More specifically, in concert with the Don and Linda Carter Foundation, the Fund's mission is to achieve the goals and ideas that are delineated above.
However, with all of the health care providers and resources that we have brought together to date, this international treatment initiative will never be maximally successful, unless we receive as many HPE patient referrals, as possible into these centers. Thus, it is imperative that we encourage you (our webpage guest) to pass on this important information and opportunity to any person or family member of a patient with the diagnosis of Holoprosencephaly (HPE), so that they may set up a consult at any of our clinical HPE centers across the country. As a physician, health care provider, family member or friend reading this website, your role in the success of this exciting opportunity is critical, because the more patients that you can refer to us, the faster we can discover successful treatments for all HPE patients.
The main reason that identifying more HPE patients helps the medical field find new treatments and cures more quickly is because each HPE patient will be asked to voluntarily provide a blood sample as part of the data collection process. The blood will be sent to the lab of the world's premier HPE neurogenetist, Dr. Max Muenke at the Children's Hospital of Philadelphia. Dr. Muenke has been studying the genetics of HPE for over 25 years and has identified multiple genes associated with HPE, already. More importantly though, the more blood samples of HPE patients that we can provide to Dr. Muenke, the more quickly he can unlock the genetic codes of the HPE patients. Once we identify and understand the genetic defect causing HPE, Dr. Muenke and other scientists can then begin to look for ways to re-engineer the defective DNA. Eventually, we hope to be able to insert the 'healthy, re-engineered' DNA into all HPE patients, and hopefully allow them to regain many of their lost functions.
Now that you understand the importance of referring as many HPE as possible to these centers, if you know anyone with Holoprosencephaly, please recommend them to our centers, so that we can all learn more about this important illness and find new treatment solutions for patients and their families. Also, remember, because these centers are working together and sharing information, each clinical team will be kept up-to-date on the latest treatment options that are known throughout the world. Lastly, these centers will work very closely with the parents of the HPE patients, to provide them with the most up-to-date information on their child's specific manifestations of HPE, as well as provide them with family support services within the developmental disorders area. The contact person to assist you with patient referrals to any of these centers is Nancy Clegg RN, Ph.D. at 214-559-8411.
Thank you in advance for all of your efforts to assist us.
Chance lived for 20 years. He touched thousands of lives and was an inspiration to everyone who met him.Harold C. Urschel III, MD, MMA