| Long Description : |
Autism Collaboration presents The A+ Research Initiative:
-Parents are feeling disenfranchised with regard to the glacial pace of autism research
-Their efforts raise millions of dollars annually for research, but parents have little or no say as to where and how the money is spent
Those decisions are typically made by a scientific advisory board whose members often lack knowledge of the real issues encountered by the autism community
-Parents and their children should be considered stakeholders with regard to autism research and therefore deserve a voice in determining the direction of autism research
What Parents Bring to the Table:
-Contribute unique personal and community experiences adding passion and urgency to the discussion
-Ensures that the human dimensions of disease are incorporated into scientific considerations, investment strategy and research focus
-Provide a critical and informed panel of consumers of autism science who have the capacity to integrate multiple disciplines and identify a research path which will help the most children the quickest
Opportunities and Models for Partnership:
-The Autism Collaboration creates the perfect opportunity and structure for embracing and executing a parent driven research agenda
-The Department of Defense, Congressionally Directed Medical Research Program provides the necessary framework for such a collaborative initiative
Autism Collaboration A+:
-Autism Collaboration brings together the most experienced autism advocacy organizations in the country
-The autism community needs a new research paradigm that embraces the knowledge and expertise of parents who live with this disease on a daily basis
-The A+ Research Initiative would serve to inform, solicit, review and fund autism research initiatives following the guiding principal of helping the most kids the most quickly!
Summary of A+ Research Initiative:
-Funding and research initiatives are determined by parent advocacy organizations who are part of the Autism Collaboration and elect to participate in the initiative
Participation in the initiative does not
-Each year new panel members, directions and initiatives are solicited and funded in an effort to keep the science constantly moving forward for our children
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