Calif- NIH wants to hear from you ...

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1. May 3 meeting - NIH wants YOUR opinion on what is needed in autism r

Posted by: " T s " tkrichards4@... tkrichards4

Date: Sun Apr 27, 2008 4:01 pm ((PDT))

Bill - Wanted to make sure you had knowledge of this! I see Kaiser Permante is

on the agenda wanting to know what autism parents think is important to

research! Teri

See below - email from NIH

NIH wants YOUR opinion on what is needed in autism research! Sat Apr 26,

2008 9:23 pm (PDT) 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):

a.. Sally , Professor of Psychiatry and Behavioral Sciences, M.I.N.D.

Institute, UC- Medical Center

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

Institute, UC Medical Center

c.. Lynne Mielke, M.D., DAN doctor and founder, Developmental Spectrums East Bay

Medical Clinic, Pleasanton, CA

d.. Duley, parent/advocate

e.. 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/intervent ions 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):

a.. Pilar Bernal, ASD Regional Director, Kaiser Permanente, Northern California

b.. Ruth Christ Sullivan, first president, Autism Society of America; founder

and first executive director, now president of Autism Services Center,

Huntington, WV

c.. Dena Gassner, ASD advocate, Director, Center for Understanding, lin TN

d.. 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.

e.. Bothwell, Board Member, National Autism Association

f.. 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!

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