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Autism Speaks Attends the DAN! Conference

Across_bridge_of_hope_cd By Katie Wright

Autism Speaks’ co-founders, Bob and Suzanne Wright, joined me in attending the Baltimore DAN! Conference. Also in attendance was Dr. Anita Sostek, AS grants administrator and Pat Kemp, AS Director of Communications. Thank you everyone for coming to DAN!

Bob and Suzanne were delighted to meet so many amazing parents, researcher and clinicians. My parents know how difficult it is for ASD parents to even leave house and were moved by the site of a thousand parents spending money they can barely afford on babysitters and travel expenses in order to learn more about how to help their children. When scientists attend these conferences they are re-imbursed for their expenses- not autism Moms and Dads!



It was great to spend some time with Pat Kemp. He is the father of a severely affected 26-year-old young man. I cannot even imagine the horrors Pat endured as a single Dad trying to get a diagnosis, education or services for his son 23 yrs ago while also raising two other children. Pat joked that he has developed a thick skin. When people tell him “go to Hell,” he replies, “Too late, I’ve already been there.” I know Pat recognized his son’s issues in many of the lectures. I hope the conference was useful to him.

Anita Sostek is AS’ grants administrator. She showed a lot of fortitude to attend a DAN! Conference with me. Poor Dr. Sostek has only been with AS a year but she listened patiently to my long time frustrations and concerns regarding the scientific advisory board. We had a lengthy conversation about the grants AS has chosen and the grants they have rejected. So I want to say thank Dr. Sostek for being open to different point of view and parent feedback.
My Dad is a low maintenance guy dedicated to his family. He never went out after work, doesn’t smoke, gamble, never had a crazy mid life crisis, etc. His only hobby outside work and his family is golf and the Masters, his favorite tournament. Bob Wright loves everything about the Masters, the intensity, the suspense, the handicapping of players, the Tiger Woods drama, Phil Mickelson…I know, many of you reading this, like me, do not share this love of golf but you know what I mean.  Speaking for myself, sometimes it is those small pleasures in life, a ridiculous reality show, a great (non autism) book, “People” that keep me sane. So wouldn’t you know it the DAN! Conference was held on the same 3 days as the Masters tournament.  My Dad never complained once about missing the whole live event. Instead he diligently sat through hours of lectures taking notes, asking questions and talking to parents.

Highlights included Dr, McGinnis’ comprehensive discussion on how and why regression happens, Dr. Jepson on mitochondrial disorders and autism, Dr. Usman’s healing the gut talk and Dr. Bradstreet’s discussion on the latest biomedical interventions. A low light was Dr. Duane Alexander’s bizarre proclamation that Autism Speaks has decided not to do any vaccine research. For the record Dr. Alexander, Bob Wright says that is categorically untrue. Yes, I would like to see more comprehensive vaccine research but the subject is not off the table.
My Mom, Suzanne, spent hours talking with the DAN! presenters. She loved meeting Dr. Bock, Dr. Hewitson, Dr. Usman, Dr. Boris, Dr. Bradstreet, Dr. Jepson, Dr. Krigsman, Dr. Case and bonded with Dr. Levinson over PTSD. To be fair to my parents it is no picnic attending DAN! with me. At least once I will experience horrible flashbacks to Christian’s regression, hospitalizations, fevers, etc and flee from a lecture room. It’s not a lot of fun for those around me. Dr. Levinson spoke about how and why so many parents are suffering from PTSD. I want to address that some more in another post. Most importantly, these amazing and courageous doctors shared stories of hope and exciting new treatment opportunities. We just need the funding!

Thank you to Jane Johnson for making us feel so welcome and to Lyn Redwood for helping to put together such an incredible conference.

Katie Wright is a Contributing Editor for Age of Autism.


Comments

Media Scholar

Sara,

This "Manhattan" project has bombed just as badly as the first one.

It's not called the vaccine industrial complex for nothing, ya know?

Garbo

Katie Wright, you are awesome. And you are doing so much for all of us and the cause. But today, Autism Speaks ran a full page ad in the Los Angeles Times advertising their big walk on Saturday at the Rose Bowl.

The ad makes 4 key points about autism:
1 in 110 diagnosed
1 in 70 boys
New case every 20 minutes

And, the piece de resistance:
"THERE IS NO MEDICAL DETECTION OR CURE FOR AUTISM".

Oh, really? Tell that to my recovered son, you disingenuous hacks. Tell that to all the DAN doctors who RUN MEDICAL TESTS and are RECOVERING CHILDREN. I know that the ad was created and placed long before they went to the DAN conference. But come on!

"Together we'll find the missing pieces"?!?!?!? Give me a f*$%ng break.

Autism Speaks finding the missing pieces by funding genetic research is like George W. Bush looking for the missing WMDs under the podium at the correspondents dinner. It's like they are making a smug joke at the expense of all those people who gave them money, and at the expense of all those new "cases" -- which, by the way, ought to have read CHILDREN -- being diagnosed every 20 minutes.

Maybe they meant to say "there is no GENETIC detection for autism even though we keep spending tons of your hard-earned money on the same tired studies so we can avoid looking at the real reasons for autism and thereby stay in the good graces of the powers that be". That would have been more accurate.

Sara

DAN FAN: "I'm a great admirer of Katie's articles and advocacy. But Katie is not AS. Not even her parents are AS. Only AS is AS. And AS has a $17 million payroll to meet and office space in the middle of Manhattan before a dime goes to autism."

Right on, Dan. And the burning question would be - why did Katie's parents setup an organization over which they hold no control whatsoever? Doesn't seem like good business sense to me. It's all very bizarre. It feels like we are not privy to the whole story.

The outrageously high administrative costs are what pushed me to stop participating in any fundraising for AS. I have better things to do with my exceptionally limited free time than to line the pockets of those living high off the hog in the name of a disorder that affects my child. With zero in return.

And why in the hell do they need an office space in the middle of Manhatten in this technologically advanced day and age? Move to friggin' Kansas for goodness sake!

Daniel Park

To Jenny:

Do you have links / references to the studies you mention on Vitamin D deficiency and inflammation? We always wondered why my son always appeared to do better during the summer months. This could potentially be the reason. I'd like to do some more reading on it...

thanks, Daniel

kerbob1

The really big question to ask is why does anybody feel there needs to be tons of money spent on vaccine research? Especially since contemporaneous research concluded that Thimerosal should have been removed from all infant and toddler vaccines.

Admittedly, over time it's so easy to forget the big stuff.

The big stuff includes the CDC computer lady who told Congressional investigators her full time job was to secretly monitor Autism rates relative to Thimerosal-containing vaccines using VSD data.

See, they were already deeply involved in clandestine activities well before the public had any idea Thimerosal was in vaccines.

More big stuff is the fact that Thimerosal-containing vaccines are pitted against other Thimerosal-containing vaccines in clinical study. Or Thimerosal-containing vaccines are pitted against Thimerosal-containing placebos.

http://clinicaltrials.gov/ct2/show/NCT00333398

If you fail to understand that poisoning the placebo to achieve balance in adverse neurological outcomes is wrong by default that makes you a complete idiot.

It took totally demented minds to lace placebos with mercury to erase the negative neurological outcomes.

It took equally demented minds to create the anti-litigation bloc of Autism research.

The roots of Autism Speaks goes way back to the days of "moral consolation". The agreements included care for any children harmed by the proliferation of Thimerosal-containing vaccines.

The big stuff people apparently have forgotten, is it was so easy to capture vaccine injured children and put them under surveillance. The unsuspecting parents were ignorant of the facts.

The vaccine manufacturing drug companies were all over the Autism issue long before most of our children were harmed. Some parents are just too proud to admit they've been playing the part of fools.

Now that time and lots of Congressional investigation has taken place these parents conduct themselves like cold-blooded criminals and spies. They vindictively and selfishly protect their self-interests, and present atrocious behavior in the presence of the truth.

In the good old days the Autism charity racket was a great way to conduct Thimerosal countermeasure experimentation. Lots of side drugs to treat the symptoms has meant crazy profits for the same drug companies supplying American babies with repetitive doses of vaccines with Thimerosal in them.

The drug companies are excellent at greasing the right palms. Parents fighting to prevent further exploitation of innocent children continue to do battle against the same hard-core quash squad defenders of brain-poisoning heavy metal each and every day.

We don't need vaccine research. The day the Public Health Service and the American Academy of Pediatrics requested that Thimerosal be removed from childhood vaccines the Autism Research Institute celebrated fully believing the Autism epidemic was over.

Of course, Bernard Rimland underestimated the recourse would be to heel-drag, lie about removing Thimerosal, and make sure Thimerosal-containing vaccines continue to target pregnant women, infants and toddlers.

People forget the big stuff. Like Bird Flu and Swine Flu II.

As a blogger noted about the latter: This reminds me too much of the 1976 swine flu hysteria - my favorite memory is Johnny Carson as Carnac giving "the Swine Flu Vaccine" as the answer to the question "name a cure for which there is no know disease."

The irony is some people in order to make a living prey upon tax dollars coming their way in the form of grants. Naturally, they are in opposition to our children.

The big stuff that people forget is the Sherman Anti-Trust Act. These vaccine manufacturing drug companies and the highly political anti-litigation bloc are tampering with everything they can get their dirty fingers on.

Parent need to work their notes and be ready to provide the appropriate authorities and the information they can when the time comes.

Remember O.J. Simpson.

RaymondGallup


Dear Lynda Huggins,

Per.............

'Raymond says "show me the money". Well I can show you over $90,000 that we have raised - a buck at a time - to fund the research we all want - through the Autism Research Institute. Read Steve Edelson's article "Vaccines: The issues and ARI’s Vaccine Initiative" and you will see how the funds collected through the Puzzle Pieces Project will be utilized. Go to ARI's web page and click on the puzzle pieces to join our grassroots effort.

If truly independent research is done - it will be us, the parents, who will fund it.'

When Bernie Rimland was alive I always had a lot of respect for him and ARI and while he is no longer around, unfortunately, I still have a lot of respect for ARI.
What I'm saying is not in reference to ARI.

When TAAP was raising money for autoimmune research into autism, there were lots of organizations/people that were playing political games to make sure we wouldn't be successful and these people/organizations talk a lot but when it comes to money for this important research they are nowhere to be found. They did a lot to sabotage TAAP so it would go out of business, but they stood on the sidelines when Dr. Singh couldn't get funding and Dr. Wakefield was under the gun.

It would have been nice if they devoted their energies for positive results that would have helped our kids. Regards to Autism Speaks, all I see is big administrative expenses (22% of their budget on salaries, etc.) and lots of talk, but no money down for autoimmune research to at least match and surpass TAAP's figure of $130,000.00. It would be nice to see that figure matched and surpassed by all the other US autism organizations (other than ARI). Wakefield wouldn't be in the fix he is in if other organizations had spent more time in funding the necessary research.

Talk is cheap. Action (money on the line for autoimmune research) speaks!!!

Raymond Gallup

Birgit Calhoun

Might Autism Speaks fund some of the studies suggested in the article "The Endocrine Effects of Mercury in Humans and Wildlife," by Shirlee W. Tan et al.published by Critical Reviews in Toxicology? The article reviews studies having been done that affect various endocrine systems. It does not mention autism specifically.

michael framson

Katie, Thanks for all that you do. Tell your dad that I watched the Masters for him. At the same time here are questions for your parents.

1)Has AS done anything to stop children from regressing into anything on the spectrum? yes or no?
2)Has AS helped any children remedy their chronic constipation or chronic diarrhea? yes or no?
3)Has AS helped children with any of the biomedical issues identified by the thousands of parents who attend DAN conferences? yes or no?

If the answer is yes, great. But if the answer is no, then a long, long look in the mirror is in order. Lead, follow, or get out of the way.

And if you decide to really lead, Geri Dawson is in the way.

kathy blanco

Currently, I am helping several studies and lines of research in autism. I didn't need any