Who are the Carters?
My name is Hal Urschel III MD, and I have a son with
Holoprosencephaly (HPE). 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 our son and
other 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. The fund is a fully tax
deductible entity, and we are always looking for ways to raise more money,
in order to support even more treatment and research centers. If you would
like to make a donation or know someone or entity that would, please send an
e-mail to urschel@marsltd.net requesting further information.
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, especially for my son,
Chance.
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.
8222 Douglas Ave.
Suite 375
Dallas, Texas 75225
214-905-5090
214-905-1998 fax
urschel@marsltd.net
