M.I.N.D. Road to the Cure
[Last week we published an interview of autism parents from Northern
California who were behind the creation of the M.I.N.D. Institute,
discussing aspects of its operations. M.I.N.D. has become the premier
autism fundraising and research center due to the $34 million funding
granted by the California legislator and governor. The following summary
is a fuller treatment of M.I.N.D.'s goals and objectives (it was provided
to legislators in order to help gain their support) and is presented here.]
The objective of the M.I.N.D. Institute is to discover the causes,
develop effective treatments and ultimately find a cure for
neurodevelopmental disorders within the next ten years. By the fifth year of
operation, we expect an effective treatment success rate of twenty percent.
In response to an ever-increasing number of cases of
neurodevelopmental disorders, in particular the autism epidemic, the
National Institutes of Health (NIH) have been mandated and capitalized by
Congress to find answers. National Centers of Excellence will be awarded in
the next year and the M.I.N.D. Institute is uniquely qualified to lead the
country in this effort. The window of opportunity is open. We have already
been recognized by the NIH as one of the leaders in the field of
neurodevelopmental disorders. In addition to the unparalleled resources at
the University of California, Davis, we are the only scientific initiative
that has a comprehensive plan expressly dedicated to neurodevelopmental
cures. We are in the process of developing critical mass for the full-scale
implementation of the plan.
Sparse research has been done and much about the causation and
treatment of neurodevelopmental disorders remains unknown. In fact, so much
is unknown about neurodevelopmental disorders that there are some who would
contend that finding the various causes and cures are not possible.
We searched the history books for a model in which the information,
time, quantity of unknowns and complexity were similar to our quest. We
found a shining example in the Apollo Space Program. In our country's
mission to land on the moon much was unknown. Rocket propulsion was in its
infancy, no one had experienced zero gravity, heat shield technology was
untested, no one had ever seen a lunar module and scientists could only
speculate about the atmosphere and surface conditions on the moon.
We applied the NASA model in conjunction with another model, the
Theory of Optimal Search, developed to locate submarines in World War I that
had vanished with no trace while underway from one continent to another. The
NASA model provided us with the management approach to complex problems of
unknown origin and quantity. Optimal Search gave us the method to determine
a starting point.
Another project, the Manhattan Project that was actually based on
quantum physics, even though we had no knowledge of quantum physics at the
time of discovery, confirmed that we could pursue our goal without having to
acquire all the knowledge associated with our goal.
Our priorities are clear and the approach linear. We exploit science
for the benefit of treatment and cure. Science is not pursued for the sake
of science. We are driven by results. We have objectives, clear
deliverables, and most importantly.... a timeline. Our goals will be
achieved through selfless dedication to teamwork and communication. At
M.I.N.D. we are defined by our success as an interdisciplinary team. By
having research, clinic, and the educational facility located together, we
are able to compress the development cycle from research initiative, to
clinical trial, to cognitive improvement and back to research.
Utilizing our "Theory of Optimal Search", we collect data from experts
in various disciplines to identify hot spots of probable cause and probable
treatment. These hot spots are prioritized. The hot spot is then identified
as a project. The project is assigned a team leader, a budget, timeline, and
milestone evaluation. The deliverable is always treatment and cure.
Methodically we set science in motion to either confirm or reject a hot
spot. The team leader will be given the responsibility for the success of
the assigned project and the authority to activate the various scientific
disciplines required for success.
This responsibility to the overall projects' success will necessitate
cross-pollination between disciplines. We are focused on outcome above
science. Treatments and cures will be tested on animal models, a clinic
population, and ultimately at the M.I.N.D. School. They will then be
reassessed back in the research lab. A project manager overseeing all
projects will be responsible for keeping the projects on schedule and on
task. All projects will be evaluated quarterly and the results presented to
the M.I.N.D. Executive Committee.
A yearly state of M.I.N.D. report is prepared, outlining
accomplishments, changes in assumptions, and identification of new hot
spots. The expectation is that each project should develop at least one
testable treatment/cure per two years of research.
Currently we have identified eight hot spots. In order of importance
they are brain damage (structural, functional), immune dysfunction
(including environmental causes), gastrointestinal, diagnosis, genetics,
animal models, hormonal, and educational projects.
Application of Funds
Because of the importance of effective team leaders, the recruitment
of the best researchers and clinicians are critical to our success. A
substantial amount of funding is required to identify, recruit, and fund
phase one of the identified projects. It is anticipated that during phase
one research that confirmed hot spots will go on to N.I.H. for funding into
phase two completion. Further funding will become available through private
donors, corporate interests, and through the technology that is developed
for treatments. Projects that do not identify hot spots will be retired.
The Sixth Man
Parents of children with neurodevelopmental disorders created M.I.N.D.
Parents are heavily involved in the direction and support of M.I.N.D. The
parents see the clock on the wall and watch childhood and hope slip away
from their children. Because of their drive, M.I.N.D. will always be
efficient, expedient, and have direction. Researchers will always be
motivated. It is the parents that are ultimate trump card, home field
advantage, and sixth man.
The State of California stands for innovation, idealism, leadership
and compassion The same California that powered the world to outer space
through its aerospace industry can, and will, power the world on a trip in
the opposite direction, to inner space and a cure for neurodevelopmental
disorders. History will reflect this as a defining moment in the legacy of
The M.I.N.D. Institute - Past, Present And Future
The Institute for the Medical Investigation of Neurodevelopmental
Disorders (The M.I.N.D. Institute) has only been in operation as part of the
UC Davis Health System since September 1998, not even 2 years. In this brief
start-up period, we have accomplished much.
Where we've been:
. We have established a Vision:
"The UC Davis M.I.N.D. Institute is a collaborative international
research center committed to the awareness, understanding, prevention, care
and cure of neurodevelopmental disorders. "
. An Executive Committee, consisting of parents of children with
neurodevelopmental disorders, community leaders, UC Davis faculty and
administrators, meets monthly to direct the activities of the M.I.N.D.
. The Interim Director, Thomas F. Anders, M.D. oversees day-to-day
operations, under the supervision of the UC Davis School of Medicine Dean,
Joseph Silva, Jr., M.D., with the advice and guidance of the Executive
. A 35-member Community Advisory Board has been established with
responsibility for 6 work groups and 1500 volunteers.
. The M.I.N.D. Institute has established collaborative ties with the
California Department of Developmental Services, the California Department
of Health and Human Services, and a range of community agencies and UC
. The M.I.N.D. Institute has just completed an international search
to recruit an outstanding Director, a physician and an undisputed authority
in neurodevelopmental disorders. This final candidate has been nominated as
the Tsakopolous-Vismara Chair and Director of the M.I.N.D. Institute at UC
. David Amaral, Ph.D. has been appointed the Beneto Foundation Chair
and Research Director of the M.I.N.D. Institute. Dr. Amaral is an
internationally renowned neuroscientist with a federally funded research
program. Dr. Amaral has established a national scientific review committee
that assists in the selection of meritorious research projects funded by the
M.I.N.D. Institute. To date, more than $3.0 million dollars have been
awarded to deserving scientists throughout the UC system to fund research
projects focusing on neurodevelopmental disorders.
Where we need to go in the next 5 years:
There is a critical "window of opportunity" in the next 24 months as
the federal government designates special funds for Centers of Excellence in
Autism and other Neurodevelopmental Disorders. The current U.S. Congress is
appropriating new funds for the National Institutes of Health for this
purpose. The M.I.N.D. Institute needs to be designated as an NIH Center of
Excellence. In this way, federal funds can be obtained to augment state
support. To accomplish this objective, and become competitive for federal
funding, we need to develop a critical mass of clinicians and scientists.
The critical mass of clinicians and basic researchers need to work
together so that each group can experience, first hand, the problems and the
successes of the other. Only in this way can research findings from the
bench be rapidly and effectively translated to patient care, and the
problems of the clinician brought to the attention of the bench scientist.
The M.I.N.D. Institute is the only facility in the United States today that
can successfully accomplish this objective.
. The clinician critical mass requires speech and language
specialists, nutritionists, behaviorists, diagnosticians, family councilors,
pharmacologists, sleep disorder specialists, neurologists, allergists,
immunologists, cognitive neuropsychologists, physical/occupational
therapists, medical geneticists, educational specialists for preschoolers,
school age children, and adolescents, and vocational rehabilitation
specialists for adults.
. The research critical mass requires scientists in molecular
biology, genetics and functional genomics, clinical neurophysiology,
immunology, physics and computational science, gastroenterology,
neuroimaging, and clinical research design (biostatistics, epidemiology,
evaluation and outcomes research).
. To fully realize its potential, the M.I.N.D. Institute requires
more space. We need a larger clinic. We need more research laboratories.
And, we need a school "laboratory" in which to test our treatments. The
M.I.N.D. Executive Committee is embarking on a major fund drive to build the
bricks and mortar. The new building(s) are scheduled to be completed by
November 2001. The buildings (research laboratories, clinical laboratories,
clinics, a day school, educational space, and community advocacy space) will
need to be equipped and furnished.
. We remain confident that, given our accomplishments to date and with
the continued support from the State of California we will achieve our
vision. In so doing, the economic and personal life-long costs of managing
affected individuals will be significantly reduced. The following budgets
(past and future) portray our vision.
. In our commitment to be responsible stewards of state money, we
will present quarterly progress reports to the legislature and to the
GROWTH OF THE M.I.N.D INSTITUTE
Yr I Yr 2 Annual One Time
1998- 1999- Appro- Appro-
1999 2000 priation priation
$(mil) $(mil) $(mil) $(mil)
Operations 0.3 0.3 0.4
Computer Support 0.05 0.05 0.1
Development 0.2 0.1 0.15
UC Davis Lease Costs 0.05 2
Equipment and Furnishings/Renovation** 0.45 9
Recruitment and Start-up Expenses 0.3 0.5 2
SUBTOTAL 0.85 1.45 2.6 11
M.I.N.D. Institute Clinic Operations
Physicians 0.15 0.3
Nurses/Social Work 0.05 0.1
Psychology Speech and Language 0.05
Physical/Occupational Therapy 0.05
Clinic Support Staff 0.2 0.3
Vocational Rehabilitation 0.05
SUBTOTAL 0 0.45 1.15 0
M.I.N.D. Institute Research Programs
Competitive UC Programs 1 1.5 2 1
Pre/Post Doctoral Scholars Program 0.1 0.2
Brain Damage Project 0.25 0.5 2
Animal Models Project 0.25 0.5 2
Molecular Biology/Hormone Project 1 2
Genetics and Functional Genomics Project 1 2
Education Project 3
Immunology Project 0.5 2
Gastrointestinal Project 0.5 2
Clinical trials/Evaluation/Epidemiology 3
SUBTOTAL 1 2.1 6.2 19
TOTAL $1.85 $4.0 $10.0 $30.0
** Renovation of clinic and labs in Year 2 only; Equipment and furnishings
in 2001 for new facilities
In the first year, funds were expended to build infrastructure, begin
recruitment and support extramural research. In the second year, funds are
being used to renovate clinic space and begin clinical operations. We
continue to support extramural research and are developing intramural
research. In future years, the annual appropriation will support expanded
core treatment and research components of the M.I.N.D. Institute at UC Davis
including the costs for the new facilities. It also will support an annual
expanded $2.0 million dollar extramural competitive UC grants program.
The one time allocation of $30.0 million provides equipment and
furnishings for the expanded clinical operation and research laboratories.
It also jump-starts critical treatment and research programs so that they
can become competitive for federal funding.
Take the Mystery out of Autism
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