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July 2008

Logo July 2008

In This Issue
ARI Studies Enrolling Now
Rural Outreach in Oklahoma
SAGE Crossing Foundation
Puzzle Pieces at the DC Rally
Autism Patches for Clinicians
Defeat Autism Now! at ASA
Caregivers Urged to Register
 
Defeat Autism Now
Fall 2008 Defeat Autism Now! Conference
Oct. 23-27
San Diego, CA
Save the Date

And save the dates for the spring conference: April 16-19 in Atlanta!
-------------------
CLINICIAN SEMINARS
July 9, Orlando, FL
 
Oct. 27, San Diego, CA

Register

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Taking Defeat Autism Now! Home
Last April, we initiated a trial version of a 'demo room,' where parents were given practical suggestions and hands-on experience with procedures that included pill-swallowing, oral syringes, and injections. We plan to sponsor a similar demo room at our Fall Conference in San Diego. We'd like your input as we build our curriculum for this fall's event.
Take our quick survey to let us know what topics and components of hands-on training are most critical to caregivers.

Survey

FDA Concedes Amalgam Risks
 
On June 12th, 2008, the FDA finally admitted on its website that 'silver' fillings in our teeth are toxic and harmful to our health, and that they "may have neuro-toxic effects on the nervous systems of developing children and fetuses." 
 
ARI has asked Donald Robbins, DMD for his recommendations for safe dentistry.
Participants 
Enrolling Now for ARI Studies
Who: Gene Stubbs, MD PC, Independent Contractor, and Kathy Henley, p. 503-351-9255 (Kathy) for more information.  
 
What: Study participation opportunity for two studies for families in the Portland, OR area who have at least one child with autism. Seeking 40 families per study.
 
1) Study of the use of probiotics (supplements that adjust the GI tract) to prevent occurrence of autism in newborn siblings.   
 
2) Study of the use of vitamin D to prevent autism in newborn siblings.  
 
Where:
Portland, Oregon, and Vancouver, Washington metro areas
 
When: Enrolling now
 
These studies are sponsored by ARI.
Links Wanted: Submit your Story
Autism.com is linking to caregiver stories about treatment and recovery. 
 
Please send links to existing stories:
- Videos (youTube, short films, etc.) 
-Videos and published news stories.
-Online (written) stories published on the Web 
 
If your written story is not yet online, you may e-mail it to us for consideration (800 words or less). 
 
ARI proudly co-sponsors Age of Autism
 
"We'll follow the truth wherever it leads, and we hope you'll come along with us and, if you can manage it, donate to The Age of Autism and help us pursue this story. Fasten your seat belts - it's going to be a bumpy ride."
- Dan Olmsted, Editor, Age of Autism
 
Submissions
Age of Autism welcomes relevant submissions that are appropriate for its readers.
Our Partners
Autism Society of America 
 
Generation Rescue
 
Medigenesis: A New Beginning in Medicine
 
NAA
 
safeminds
 
Schaefer Autism Report
 
TACA
 
Treating Autism
 
Unlocking Autism
About the ARI E-Newsletter:
This newsletter is compiled, written, and edited by ARI parents, and we welcome your input. If you have questions you would like answered, a story you would like to submit, or an idea for something you would like to see discussed or explained, please submit it.
 
Contributing Editor:
Jane Johnson
 
Technical Support:
Denise Fulton
 
Additional Assistance:
ARI offers a toll-free line with information, contacts, and access to resources available through the Autism Research Institute. Call: 866.366.3361  
Join Our Mailing List
From the Director:
 
edelsonSummer is upon us, and ARI's staff is spending much of the season redesigning its main websites, autism.com, autism.org and autism.tv while developing several new Internet sites including www.Autism.mobi (formatted for mobile phones and PDAs), www.AutismPodcast.com, and www.Autism.name. We hope these new websites will provide the autism community much more access to ARI's initiatives and projects.
 
I plan to dedicate my summer to analyzing ARI's huge database. Over the past 40 years, Dr. Bernard Rimland distributed several surveys. My aim is to uncover relationships in the data that will provide us with new insight into diagnosis (with the possibility of subtyping), the underlying causal factors, and appropriate treatment (possibly for subtype). Wish me luck!
 
One of the biggest autism events of the year - ASA's 39th National Conference on Autism Spectrum Disorders - is set for July 9-12 in Orlando. ARI is sponsoring a one-day clinician seminar Wednesday, July 9th, followed by a series of lectures on the Defeat Autism Now! approach Thursday, July 10th. If you attend the conference, please stop by our booth and say 'hi.'
 
And with the summer here, do your best to stay cool.  
 
Regards,
Steve Edelson, Ph.D.
Director, Autism Research Institute
Defeat Autism Now! Science Director Jon Pangborn Ascends to Emeritus Status
Science Director to Retire after San Diego Conference
 
pangbornDr. Jon Pangborn has announced plans to retire as DAN! Science Director after the next conference (October, San Diego).

In a recent message to the executive committee, Dr. Pangborn said:

"The Defeat Autism Now! that Bernie, Sid, Maureen, and I leave in your care has made astounding progress toward understanding and effectively treating autism. This was achieved by working together, understanding each other's needs, and respecting the efforts of others as the best possible. I'm sure Defeat Autism Now! is in caring hands and that it will be your pride and joy, as it is mine (and Christine's too!)."

Because of who he is as a person as well as his invaluable experience and guidance, we are saddened by his retirement and pleased that Dr. Pangborn has agreed to join Dr. Baker in Emeritus status on the Defeat Autism Now! Executive Committee.  As father of a son with autism, he has studied the biochemistry of autism for more than a quarter of a century.  A Fellow of the American Institute of Chemists, he was a founder of DAN!, co-authored Autism: Effective Biomedical Treatments, is a consultant for Kirkman Laboratories, a certified clinical nutritionist, and adjunct professor of nutritional biochemistry at The Union Institute as well. He plans to continue as a consultant to ARI, an activity that began in the early 1980s.

Dr. Pangborn's Executive Committee duties will be assumed by Professor James Adams.
Rural Outreach Expands to Oklahoma
ARI Program Reaches Rural Areas in the "Sooner" state

eHart 
My name is Eimile Hart and I'm from Norman, Oklahoma. 
 
I am thrilled and honored to be a Rural Outreach Consultant for ARI. I look forward to the challenge and the rewards of helping others learn that Autism is Treatable and that our children can in fact get better.
 
There is such a need in our state of Oklahoma to inform families, doctors, and educators of the hope of biomedical interventions and healing for our children, especially in rural areas. I am planning my first outreach event in Chickasha, OK in mid-July.

About Eimilie:
I am married with four children: Gillian 7, Liam 5, Aidan and Sean 4 - Aidan and Sean are our twin boys with autism. They were diagnosed with mild/moderate autism at 2, and we immediately intervened after coming across ARI's website. We continue using biomedical interventions under the supervision of our doctor to heal our boys. We are also doing numerous therapies including intensive ABA, Speech, OT, hippotherapy, video-modeling, and floor-time as well. Since starting interventions two years ago, Aidan and Sean are doing fantastic! They are very social - they have great speech, and they are starting conversation. They now have wonderful pretend play, they love to share, and they are starting to bond with each other the way brothers should - I am so amazed by them every day.  
Parent's Perspective: SAGE Crossing Foundation - Joining the Farm Team
By Harriet Barnett
 
sageWhen our now 23-year-old severely autistic son, Andrew, was nearing his milestone 22nd birthday, I approached the occasion with the same zealous determination and meticulous organization I applied to our daughter's college search. 
 
Starting a full year in advance, I visited fifteen adult day-hab and vocational facilities in the Greater Boston area (some of them far enough from our home that I was told that transportation could not be guaranteed), just to get a sense of what was out there.  I also went to see some group homes nearby.

To my dismay, I couldn't picture Andrew fitting in anywhere. 
 
Even the well-run facilities offered largely sedentary existences. Many of them mixed the disabled together - combining people with significant physical problems with people who were cognitively impaired - in ways that made little sense to me. No place seemed to play to Andrew's strengths (his strong constitution, love of the outdoors, and affinity with animals), or his weaknesses (his anxiety about large buildings, the potential dangers posed by urban settings in busy, car-filled streets). We finally decided to keep Andrew at home and settled on a nearby day program to which I drive him while we're on a waiting list for transportation. This is supplemented by a cobbled together after-hours regimen that includes daily swimming, hiking, and dog walking, for which we privately pay. But we always hoped there could be something better.
 
An avid, longtime subscriber to the ARI Newsletter, I remembered reading persuasive columns by Bernard Rimland as far back as 1991, extolling the virtues of the non-urban lifestyle choice for some autistic adults. One impassioned essay argued the farmstead as a needed alternative to group homes - many of which Rimland noted, reject autistic people. To him, a farm represented a safe and serene place where autistic adults can get daily exercise and find year-round work. And transportation to the jobsite is a non-issue. 
 
So I was very pleased to be approached by another Boston-area mother, Linda H. Davis, who had a dream of starting a therapeutic farmstead in Massachusetts, where our adult children could live meaningful, productive lives in a community of their peers.  Inspired by Bittersweet Farms in Ohio - the first United States farmstead devoted solely to the care of autistic adults, and a twenty-five-year success story - Linda's compelling idea had a timely green twist that involved organic farming, extensive recycling, and LEED-certified buildings. Along with a small group of mothers who had also kept their young adult autistic children at home, we formed the SAGE (Special Adults, Greener Earth) Crossing Foundation.

The past year has been busy for SAGE.  We have put together an impressive Advisory Board (we are particularly honored to have ARI's director, Steve Edelson, with us). We obtained our non-profit, 501 c (3) status, and did extensive research - in the form of fields trips and telephone interviews - in order to document the benefits of farm life for autistic people. 
 
Last spring, MIT's Sloan School of Management allowed six MBA students to do a for credit, pro bono study on the funding and sustainability of SAGE. We now have a solid business plan. 
 
SAGE is currently seeking funds, land (ideally, donated), and alliances with people who can help us finance our pilot program, and get it off the ground. Like many non-profits, we urgently need a fundraiser for our board. We would be grateful for small donations, as well as large. By becoming a "Friend of SAGE," you can keep abreast of our progress through our quarterly newsletters.
 
We'd also like to hear from people who are trying to do something similar. Since SAGE is a model designed to be replicated throughout the country, we will happily share our knowledge and work with other families who want to duplicate our pilot program. 

Puzzle Pieces on Independence Avenue
Jersey Mom Helped Families 'March In Spirit' in D.C.
 
govrallyEarlier this year we announced Brick, NJ Mom Ellen Sweeney's plan to represent loved ones affected by autism who couldn't be at the Green Our Vaccines Rally in Washington D.C. In exchange for the purchase of a Million Dollar Puzzle Piece, Sweeney committed to creating a tribute sign with all proceeds going to ARI. Sweeney and her children made good on the commitment, carrying a sign bearing the photos that families sent to her.  
 
"Thanks so much for helping support ARI and the Green Our Vaccines Rally!" Sweeney said.  
 
Sweeney, along with her daughter and her 12-year-old son Nick (ASD) - carried their 'Marching In Spirit' sign as a team. "My son was complaining a bit about the heat, but then he looked at the poster and asked 'who are these kids?' I explained: We're here because of the kids on the poster - and what happened to you. We're here for them, and for you - and after that he didn't care about the heat. I just kept hugging him."
 
The June 4th rally drew more than 8,500 people and was organized by Talk About Curing Autism (TACA), Generation Rescue, Healing Every Autistic Life, and Moms Against Mercury.

Sincere thanks and congratulations to the Sweeneys - who raised more than $200 for research that makes a difference.
 
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Want to Start Your Own Puzzle Piece Campaign?
Contact us and one of our all-volunteer committee members will send you packets of 50 puzzle pieces and give you the return information as well as a poster to display with the puzzle pieces, and a letter to present to business owners. Our goal: "Let's put these puzzle pieces across the entire U.S. and support the research we all want and need." 
 
Share your Success Please tell your success story about selling Puzzle Pieces, to inspire others to help us in our quest to fund research that makes a difference for individuals living with autism today. 
 
E-mail Organizers
'Think Autism, Think Cure' Patches Offered For Clinics
Contact NAA to Request Free Patches for Clinical Staff
 
autism_patchThe National Autism Association (NAA) announced this month (July) it is offering complimentary "Think Autism, Think Cure" patches to all clinicians and staff using a biomedical approach to treat autism. Medical professionals and staff can  stitch or iron the patches onto lab coats and scrubs.
 
According to NAA Vice President Ann Brasher, "We would like to offer these patches to any practice using a Defeat Autism Now! approach to further communicate the message of hope to families."
 
Send:
Name/clinic, address and number of patches requested (up to 12) to: ann@nationalautism.org 
Defeat Autism Now! Events Slated for ASA's Annual Conference in Orlando
Clinician Seminar July 9th, Parent Track July 10th 
 
The Autism Society of America has graciously invited ARI to present a Defeat Autism Now! Clinician Seminar at the annual conference at the Gaylord Palms in Orlando this July.
 
oharaClinician Seminar July 9th
Dr. Nancy O'Hara has coordinated a
Clinician Seminar for Wednesday, July 9th. Dr. Dan Rossignol and Dr. Bryan Jepson will join her as they explain the basics behind medical treatment for autism. (Parents: this year more licensed healthcare professionals than ever before have attended our Clinician Seminars. Many come because parents ask them to learn more about the treatment of autism. Please help us continue this trend. You can print the online pamphlet (pdf).
 
This same pamphlet can be used to promote the clinician seminar in San Diego on October 27th.) The pamphlet reminds clinicians that we offer continuing medical education credits (CMEs).

At the seminar we will review scientific data that form the foundation for effective medical treatments, focusing on metabolic, gastrointestinal, immunologic and neurological function. 
 
We will discuss common features of the medical history, physical exam, and laboratory findings most often associated with autism that are amenable to medical intervention. Clinician Seminar Registration
 
Parent Track July 10th
On Thursday, July 10th, there will be a Defeat Autism Now! track for parents:

Mind the gut: The crucial role of intestinal health
Nancy O'Hara, MD

The GI tract does much more than process food; it is key in the production of neurotransmitters, and is central to immune response. Gut inflammation, dysbiosis, and digestive enzyme abnormalities are common in children with autism spectrum disorders.  Dr. O'Hara will explain the surprising roles of the GI tract, and how restoration of good intestinal function not only addresses GI symptoms, but also in many cases has a positive impact on so-called autistic behaviors.  
 
rossignolDetoxification, inflammation, and oxidative stress in autism: testing and treatment
Dan Rossignol, MD
Multiple studies demonstrate that some children with autism carry increased burdens of environmental contaminants, such as heavy metals, pesticides, and chemicals.  Many of these children also have inflammation in the brain, and increased levels of oxidative stress.  All of these problems can impair function.  Testing for these problems and individualized treatments for your child will be discussed.
 
jepsonUnderstanding the role of medical interventions in autism
Bryan Jepson, MD

Dr. Jepson will present the elements critical to an understanding of the medical nature of autism.  He will discuss how the history of the disease has affected mainstream medical thinking; the autism epidemic and how it implicates the environment as a cause; the nature of the biochemical interactions among the major organ systems, and how they relate to autism symptoms.  He will also give a general overview of medical treatments and review the scientific rationales for various treatment options.  
 
We hope to see you there!
Caregivers Urged to Register Loved Ones
Tissue Bank for Developmental Disorders and ARI Provide Ongoing Registration to Advance ASD Research  
 
smallbutterflyThe Autism Research Institute is working closely with scientists and clinicians throughout the country in an effort to find effective treatments for this devastating disorder. According to these experts, limited availability of tissue from children who suffer with autism is hampering research, because without actual tissue it is difficult to determine the basic biological defects responsible for this disorder. This need has prompted ARI to enter into a partnership with the Brain and Tissue Bank for Developmental Disorders at the University of Maryland, under contract to the National Institute of Child Health and Human Development (NICHD), to support tissue donations.
 
Anyone Can Be a Donor
Anyone, regardless of age, is invited to register as a tissue donor. The tissue bank is as much in need of control tissue as tissue from those with autism. Tissue must be recovered within 24 hours, because after this time the tissue has lost most of its usefulness for research purposes. Therefore, advance registration is important in that it enables the intricate process of tissue recovery to occur in a timely manner.
 
Even if a person is not registered in advance, tissue donation may still be possible by calling the toll free number below. 
 
To register: call 1-800-847-1539 or 1-410-706-1755 (from outside the continental U.S.) to request a packet or discuss any questions or concerns relating to tissue donation.
 
How to help spread the word: Contact the NICHD Tissue Bank:
University of Maryland
Department of Pediatrics
655 West Baltimore St., 13-013 BRD
Baltimore, MD. 21201-1559
Toll free 800-847-1539
Ph. 410-706-1755
Fx. 410-706-0038

E-mail NICHD
NICHD website
Purchase New CD to Support Research that Makes A Difference
A portion of the proceeds from Gregory Page's new album will go to ARI
 
pageGregory Page - a singer/songwriter residing in the Kensington area of San Diego (home to ARI)  - has adopted autism as a cause that he wishes to support. His interest in supporting research that makes a difference was sparked by his friendship with his neighbor, Mark Rimland. In 2006, Gregory featured one of Mark's paintings on the cover of his album Daydreaming at Night
 
The title track of the new CD "All Make Believe" was inspired by Mark (the lyrics even include a reference to the Secret Night World of Cats, a book that Mark illustrated). The CD includes 13 tracks of delightful songs with appeal for both adults and children. 
 
A portion of the proceeds from sales of the CD will be donated to ARI to support research to validate and discover new treatments for autism.
 
 
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