Autism Research Town Hall Meeting

[RobinN]

I know there are some caregivers here with those that have seizures and autism. A rough ride to say the least. However, I came across this announcement in another group, and I decided it was important to post it. It proves that we are moving in the right direction. To have them acknowledge the fact that parents are the best at knowing the facts by stating, "No researcher knows autism like those living with, working with, providing treatments for and loving those with autism."

It looks like it would be well worth the trip.

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 Davis 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 Davis 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. Davis M.I.N.D. Institute, at 916-734-9023,
or Christine 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 Davis

10:05 Opening Remarks–Samuel Wilson, Acting Director, National Institute
of Environmental Health Sciences (NIEHS)

10:15 Interagency Autism Coordinating Committee (IACC) Strategic Planning
Process to date—Cindy Lawler, NIEHS IACC representative

10:30 Introductory Remarks from Panel 1 Moderator: Michael 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 Rogers, Professor of Psychiatry and Behavioral Sciences,
M.I.N.D. Institute, UC-Davis Medical Center
* Randi Hagerman, Professor of Pediatrics, Medical Director, M.I.N.D.
Institute, UC Davis Medical Center
* Lynne Mielke, M.D., DAN doctor and founder, Developmental Spectrums
East Bay Medical Clinic, Pleasanton, CA
* Nancy 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 Davis 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,
Franklin TN
* Rick Rollens, co-founder of the UC Davis 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.
* Claire 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--Samuel Wilson, 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. ®

[Bernard]

That's pretty cool. I wonder if the NIH will start sponsoring similar meetings for other conditions. I'd give them an earful about epilepsy....

[RobinN]

We need a famous passionate parent that is willing to go on Larry King and battle it out with the CDC

I sure wish she would stress her son's seizures more. I might write to her and suggest that. Telling her that there is a whole subgroup here that might be willing to stand up with the autistic community if they would include those stricken with seizures. Not easy to pin point a particular occurance for many with Epilepsy, as they have with autism. However, it might be, if parents begin to keep better records.