NIH INVITATION TO CALIFORNIA AUTISM ADVOCATES

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 groups 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 2  ½ 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!

Comments

[mary]

Les,
Can you point us in the direction of research showing that this is true? I have heard the paternal age argument over and over again but no one ever seems to be able to provide documentation. Thanks.

[Les Feldman]

Please do a study on paternal age and autism on a very big scale. Also include the age of the father of the mother at her birth. Paternal age is a major cause of autism and people should be warned. This is a neglected cause of much sporadic, non-familial autism which starts to rise for some men in their 30s and gets worse with age.