NIH/IACC Public Meeting - California

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ATTENTION: CA Parents/Caregivers/Clinicians

YOU ARE INVITED!

NIH wants YOUR opinion on what is needed in autism research!

The NIH Interagency Autism Coordinating Committee (IACC) cordially invites

parents who are affiliated with SafeMinds, the National Autism Association

(NAA), the Autism Research Institute and Defeat Autism Now!, the M.I.N.D.

Institute, FEAT, TACA, Generation Rescue, Autism Society of America and any

other local or national group chapters to a Town Hall Meeting. The meeting

is free and open to the public. Advance registration is not required.

WHO? The Interagency Autism Coordinating Committee (IACC) of the NIH

(National Institutes of Health) hosted by the National Institute of

Environmental Health Sciences (NIEHS) and the National Institute of Child

Health and Development (NICHD) with gracious donation of facilities on the

UC campus.

WHAT? Town Hall Meeting to hear what parents and the clinicians treating

those with autism believe are the most fruitful areas of autism research,

discuss the possibilities and develop the next steps for autism research.

WHEN? Saturday, May 3, 2008. 10:00 a.m. – 5:00 p.m.

WHERE? The Cancer Center at UC Medical Center, 4501 X St., Sacramento.

Ample event parking will be available in Visitor Lot 4 adjacent to the

Cancer Center.

WHY? The IACC at NIH is presently working on next year’s strategic plan for

Autism Research scheduled to be completed and presented to HHS Secretary

Leavitt this summer. Now is the time to let your opinion be heard. Tell them

what type of research do YOU want to see. Neurobiology? Promising medical

and/or behavioral treatments? Best practices in services/delivery? Research

into environmental causes/triggers? Prevention? Epigenetics?

For further information: please contact Phyllis Brown, senior public

information officer for the U.C. M.I.N.D. Institute, at 916-734-9023,

or Bruske Flowers Director, Office of Communications and Public

Liaison, National Institute of Environmental Health Sciences, National

Institutes of Health (NIH), at 919-541-3665..

Town Hall Meeting Agenda

10: 00 Welcome—Isaac Pessah, Director, Center for Children’s Environmental

Health and Disease Prevention, UC

10:05 Opening Remarks– , Acting Director, National Institute

of Environmental Health Sciences (NIEHS)

10:15 Interagency Autism Coordinating Committee (IACC) Strategic Planning

Process to date— Lawler, NIEHS IACC representative

10:30 Introductory Remarks from Panel 1 Moderator: Chez, Director

of Pediatric Neurology, Sutter Neuroscience Institute, Sacramento CA

Panel 1: ASD treatment: developing research priorities for evidence-based

practices

Goal: Stimulate discussion about the range of treatments being used; develop

recommendations about research priorities including issues of efficacy and

safety.

Description: A range of conventional and alternative/complementary

approaches are being used by parents and clinicians to treat children with

ASD, yet many have not been studied in controlled clinical trials. How can

a stronger evidence base be established to inform the treatment of

individuals with ASD?

10:40 Perspectives from panel members (5 minutes each):

* Sally , Professor of Psychiatry and Behavioral Sciences,

M.I.N.D. Institute, UC- Medical Center

* Randi Hagerman, Professor of Pediatrics, Medical Director, M.I.N.D.

Institute, UC Medical Center

* Lynne Mielke, M.D., DAN doctor and founder, Developmental Spectrums

East Bay Medical Clinic, Pleasanton, CA

* Duley, parent/advocate

* Lyn Redwood, IACC public representative, cofounder Coalition for

Safe Minds

11:20 50 minutes for open dialogue with attendees

12:10 Lunch (on your own)

1:10 Introductory Remarks from Panel 2 Moderator: Isaac Pessah, Director

UC Center for Children’s Environmental Health

Panel 2: ASD interventions, beyond the young child.

Goal: Stimulate discussion about the differing needs of older children and

adults with ASD and review the current state of science in this area;

develop research recommendations for interventions that target this

underserved population.

Description: To date, autism treatment research has been focused primarily

on young children, with little attention directed at treatment/interventions

for older children, adolescents and adults with ASD. Community views about

treatments and intervention across the lifespan are needed to develop

appropriate research questions.

1:20 Perspectives from panel members (5 minutes each):

* Pilar Bernal, ASD Regional Director, Kaiser Permanente, Northern

California

* Ruth Christ Sullivan, first president, Autism Society of America;

founder and first executive director, now president of Autism Services

Center, Huntington, WV

* Dena Gassner, ASD advocate, Director, Center for Understanding,

lin TN

* Rick Rollens, co-founder of the UC M.I.N.D. Institute,

co-founder of Families for Early Autism Treatment (FEAT), a former honorary

board member of Cure Autism Now (CAN) and a former national board member of

the Autism Society of America.

* Bothwell, Board Member, National Autism Association

* Lee Grossman, IACC public representative, president and chief

executive officer, Autism Society of America

2:00 50 minutes for open dialogue with attendees

2:50 Break

3:05 Moderators --Summarize discussions

3:25 Open dialogue with IACC and attendees

4:25 Closing remarks-- , Acting Director, NIEHS

5:00 Meeting Adjourns

Special Note: The most meaningful research is guided by stakeholders. No

researcher knows autism like those living with, working with, providing

treatments for and loving those with autism. NIH is asking your opinion and

have devoted over 2½ hours on the agenda for discussion. Please make a point

to set aside this day to tell them what you think. A collective group of

opinions for the direction of autism research will go along way to helping

children, adolescents and adults with autism!

Think Autism. Think Cure. ®

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