Autism

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Autism HopeHow Science will Lead Usto a
Cure

• Peter Bell
• Autism One Conference
• May 26, 2006

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History of Autism
1990s present
1940s 1960s
1960s 1980s
Age of Hope
Age of Denial
Age of Defeat
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The Difference of a Decade

• Autism in 1995
• Rare (1 in 2,500)
• Poorly understood
• Not treatable
• Lifelong disability
• Nothing you can do
• NIH Budget 5MM

• Autism in 2005
• Epidemic (1 in 166)
• Better understood
• Treatable
• Recovery
• Early Intervention
• NIH Budget 90MM

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What Changed?

• Parents refused accept status quo
• CAN, NAAR and DAN! founded in 1995
• Built a vibrant autism research field
• Developed resources (AGRE, ISAAC, ATP)
• Lobbied for more government spending
• Childrens Health Act of 2000
• Combating Autism Act of 2005
• Raised critical awareness
• Gave families hope

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What is Cure Autism Now doing to find a cure for
autism?
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Science
Our Mission To accelerate scientific research
to prevent, treat and cure autism -- for
individuals and families today and for future
generations.
Advocacy
Outreach
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CANs Core Beliefs

• Urgency Matters
• Autism is a national emergency
• A cure will come during our childrens lifetime
• Improved Quality of Life is Possible
• Autism can be treated
• Early identification leads to better outcomes
• Science is Key to the Solution
• The people who will solve autism are alive today
• Science can be hurried

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CAN Science

• Field-building grants
• Pilot, YI, Treatment, Innovative Technology,
  Bridge
• Recognition awards
• Genius and Innovator
• Resource development
• AGRE, ISAAC
• Treatment networks
• ATN, CTN
• Collaborative Science Groups
• Autism Summits, Workgroups

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CAN Outreach

• WALK NOW Resource Fairs
• 17 CAN chapters across the U.S.
• Communications materials
• Connections e-newsletter (2 per month)
• Advances newsletter (2 per year)
• Web sites
• www.cureautismnow.org
• www.familyagre.org
• www.combatautism.org

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CAN Advocacy

• Childrens Health Act of 2000
• Combating Autism Act of 2005
• CDC Early Identification Campaign (Learn the
  Signs. Act Early.)
• Various state legislation
• Banning mercury in vaccines
• Health insurance equity

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Revenue Growth
21
50
28
26
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Scientific Framework forFinding a Cure
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Disease Research
ETIOLOGY What causes it?
Why does someone get autism?
What are the problems associated with autism?
PATHOLOGY What is it?
DIAGNOSIS How do we measure it?
How do we know if someone has autism?
TREATMENT How do we make it better?
How can we help individuals with autism?
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CAN Research
ETIOLOGY What causes it?
Why does someone get autism?
AGRE, Environmental Initiative
What are the problems associated with autism?
PATHOLOGY What is it?
Brain Development Initiative, Autism Summits
DIAGNOSIS How do we measure it?
How do we know if someone has autism?
CAN Consensus, Biomarker Initiative, Psychometrics
TREATMENT How do we make it better?
How can we help individuals with autism?
ATN, Treatment Grants, Neuroplasticity
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FIND THE PROBLEM (Pinpoint the underlying
biologies and their causes) Curing autism will
require knowledge of the underlying biological
problems. Until now, these have been slow to
unravel. CAN attacks this problem by
aggressively promoting research that
characterizes all levels of impairment, from
behavioral to cellular to molecular. Through
field building grants and our targeted
initiatives, CAN recognizes that to cure autism
we must find the common pathologies underlying
autistic behaviors, identify the different forms
of autism, and create the model systems necessary
to develop therapeutic interventions. Young
Investigator Grants Pilot Project Grants Brain
Development Initiative Genetics Initiative
Environmental Initiative
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FIND THE CHILDREN (Early Identification and
Diagnosis) Although autism is a biological
disorder, currently it can be defined using only
behavioral criteria. The earlier treatment
regimes begin, the better the life-long outcome
for autistic individuals. Unfortunately, a
reliance on behavioral diagnoses means that
although autism begins its manifestation in early
postnatal life, it cannot be reliably diagnosed
until much later. To begin intervention at the
earliest possible time, there must be better
methods for diagnosis. CAN is in pursuit of less
subjective methods of assessment, especially
those that rely on biological markers. Young
Investigator Grants Pilot Project Grants
Psychometrics Initiative Biomarker Initiative
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FIND THE TREATMENTS (Intervention approaches and
treatment gold standards) There are no commonly
accepted standards for autism treatment.
Treatments vary regionally, and no system is in
place to coordinate development of treatment
protocols, nor their validation to qualify for
insurance coverage. CAN believes all families
should have access to the best, state-of-the-art
care. To achieve standardization of treatment,
CAN supports research into development and
translation of innovative therapies, creation of
assistive technology, and formation of centers
with integrated treatment teams. Treatment
Grants Neuroplasticity Initiative Innovative
Technology Initiative Autism Treatment
Network Clinical Trials Network
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FIND THE MEANS (Research Resource
Development) CAN has spent over ten years
building the field. Understanding a complex
disorder such as autism requires the generation
of large amounts of data and many expensive
resources. CAN believes that science can be
hurried by facilitating collaborations and
removing the barriers to sharing data. We create
a virtual lab of autism researchers by
promoting cross-disciplinary collaborations,
reducing waste and duplication of resources, and
generating the standards needed to create and
manage data repositories accessible to
all. AGRE ISAAC IMFAR Research Summit
Meetings Clinical Trial and Research Listing
Service
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New Projects for 2006

• Clinical Trials Network
• Neuropathology Workgroup
• Environmental Innovator Awards
• Targeted Genetic Risk
• National Database for Autism Research
• Autism Summit Meeting Neuroimaging
• Clinical Trial/Research Project Listing Service

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Why Genetics?

• Genetic component is clear!
• Twin studies
• Known genetic disorders explain 10-15 of autisms
• Knowing the genes might allow us to
• Understand the pathophysiology
• Predict recurrence risk
• Predict reaction to environmental triggers
• Predict response to various treatments
• Gene ? Protein ? Pathway ? Treatment

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Summary

• Age of Hope A cure will be found during our
  childrens lifetime
• Science is the key to finding a cure
• Urgency matters
• Unity within our community must prevail