Autism Collaboration presents The A+ Research Initiative

Statement of Problem

• 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!

Department of Defense Model

• Panel members meet initially to decide the program’s mission and goals for the year
• By panel member consensus, specific areas are identified that are in need of research
• Research budget is established and mechanisms for funding decided
• Request for proposals announced to the research community
• Panel reconvenes to review proposals and vote on funding

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 preclude an organization from fundraising or funding their own specific organizational research initiatives
• 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