Managing Editor's Note: You can read Katie Wright's informative and often jaw dropping posts on the IACC by scrolling through her category, HERE.
By Katie Wright
I have many favorite IACC moments. At the top of the list has got to be when Nancy Wiseman, autism Mom, dressed down Dr. Yvette Janvier. Janvier had been pontificating about how she “knew” autistic kids were perfectly healthy and she had never seen an ASD child with gut disease or immune problems in 20 years. Pretty scary right? Anyways, Wiseman let her have it, sharing the heart-breaking misery her ASD daughter endured because she had undiagnosed PANDAS for years. Wiseman described her frustration as doctor after doctor missed the diagnosis and her daughter got progressively sicker, losing more skills, speech and abilities.
My second favorite moment was at the same meeting. A number of panelists were absent. Of course this is the norm for certain federal members. Stephen Shore, I love Shore, always gets right to the point, no talking just to ruminate aloud or hear himself speak. Dr. Insel asked why a panel member representing the aspergers community was absent. Immediately, Shore responded that this woman, “ had been knocked out by the flu shot.” Shore told the panel that the poor woman was so sick post flu vaccine that she could not get out of bed or travel. Sure enough, the woman’s twitter account verified this information. A grown woman, who probably weighs at least 120 pounds, received ONE vaccine one day and was “knocked out” by adverse effects.
Wow, does that ring any bells for anyone else? Imagine that! Most of our kids got 5 and 6 vaccines on ONE DAY when they weighed less than 20 pounds! Yet when parents have tried to broach this subject they are dismissed as hysterics “looking for something to blame.”
The look on all the committee members’ faces was priceless. The discomfort in the room seemed palatable and someone hurriedly changed the subject, naturally thwarting an open and honest discussion of adverse vaccine reactions. This despite the fact, that an IACC member had been completely incapacitated by one flu shot.
In November Peter Bell arranged for IACC to hear from a number of families affected by autism. It was a great day. Parents spoke about their children’s struggles in the here and now and the paucity of treatment options. Many expressed frustration that the majority of autism research monies had been invested into long term genetic studies that have reaped no rewards for their kids. Judy Chinitz shared her son’s Alex’s harrowing journey into autism and severe gut disease to a stunned audience. Incredibly, it was the first time, IACC invited a Mom of a severely affected sick child to speak. Predictably, almost none of the IACC members went to speak to Judy afterwards.
In that same meeting Theresa Wrangham was first on the agenda for public comment. She sat down next to Dr. Insel and placed a beautiful 8x 10 framed photo of her daughter Rachel on the table. Theresa spoke about Rachel’s incredible battle to regain her health, speech and other skills and how she hopes that Moms and Dads no longer have to fight this fight own their own while the NIH ignores the needs of these children. Theresa also spoke about hope and all the innovative treatment inventions that IACC could be studying.
Finally, I just re- read the “What causes autism?” section of the IACC’s plan. At long last, 2 years in the making this work has been completed. It is written by bureaucrats for bureaucrats , devoid of community input except from the most archetypal quarters. We all need a laugh so here goes. IACC lists parents who are related to each other, specifically parents who are first and second cousins as a major causation factor. This is so desperate it is actually funny. What is this- “Deliverance?” How many of us are married to our cousin? .1%? Yes, yes it’s common in other parts of the world but NOT here. Then IACC cites more biased “don’t study vaccine safety” research from their pal and former vaccine company employee, Eric Fombonne, a man currently under investigation by MacGill University.
Despite the fact autism is an extremely heterogeneous disease this earth is flat society advocates studying parental inbreeding as a possible cause of autism, not adjuvants, the effects of combination vaccines or a host of other important environmental factors. Doesn’t that just say it all?
I would like to encourage everyone who can, to listen in on Monday’s IACC meeting. Dial in, post a comment, send them questions and then forward all that to your Congressperson and Senator’s office. Be sure to mention that you and spouse are NOT cousins.
Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.
Here's how you can participate in the meeting:
The Interagency Autism Coordinating Committee (IACC) will be holding a Full Committee Meeting on Tuesday, January 19, 2010 from 9:00 AM – 5:00 PM ET at the William H. Natcher Conference Center, NIH Campus, in Bethesda, MD.
The purpose of the IACC meeting is to discuss and vote on recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorders Research. The meeting will also include a presentation on epigenetics and autism by Dr. Andrew Feinberg of Johns Hopkins University School of Medicine.
The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. The meeting will be remotely accessible by videocast and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.
To access the conference call:
USA/Canada Phone Number: 888-577-8995
Access code: 1991506
Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the conference call, please-mail IACCTechSupport@acclaroresearch.com.
The latest information about the meeting can be found at: http://iacc.hhs.gov/events/2010/full-committee-mtg-announcement-January19.shtml
You received this announcement because you attended a previous meeting of the IACC or joined the IACC mailing list. We apologize for duplicate notices. For more information on this meeting, or the IACC, please visit http://iacc.hhs.gov/
The IACC also can now be found on Twitter (www.twitter.com/IACC_Autism).
Please note: The meeting may end prior to or after 5:00 PM AT, depending on the needs of the committee.
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