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October 2008

Logo July 2008

In This Issue
Coming to San Diego? Tell the Press About the Conference
Phoenix Zoowalk Set for Oct. 18th
Autism Discrimination Site now Online
MMR Study Offers Flawed Conclusions
Book Launch to Benefit ARI
Events in the Community

shield

Fall 2008 Defeat Autism Now! Conference
Oct. 23-26
San Diego, CA
 
CLINICIAN SEMINAR
Monday, Oct. 27

Register

 
Volunteers Needed:
Volunteers are crucial to the success of the conference, offering assistance to parents and conducting the tasks required to make the event run smoothly and offset our costs. This keeps the event as affordable as possible for all. We need your help.  
 
Please consider giving two to four hours of your time to help out - volunteers are able to attend sessions and events, with a discounted rate of just $85 per day. 
 
To become a Defeat Autism Now! Fall 2008 Conference Volunteer and get the reduced rate: 
 
Click the Volunteers Discounted Rate $85-per-day option on the Conference Registration Form.
   
 
Once you have registered, our Director of Volunteers will contact you to assign you a post that is convenient for you and helpful to us. Congratulations, you're now part of the team!
 --------------------
SAVE THESE DATES:
Defeat Autism Now! Spring 2009 Conference
April 16-19, 2009
Renaissance Waverly Hotel
Atlanta, Georgia
Defeat Autism Now! Mini-conference
June 13 - 14, 2009
Oklahoma City, OK
Tell Your Local Press Your Plans to Attend Defeat Autism Now!
 
If you are traveling to the fall conference, we hope you'll tell your local press about your plans to attend this premier conference, where parents and clinicians join together to pool their understanding, to uncover causes, focus on effective treatments, and share our happiness at the recovery of some children.     
 
How to Help
We've prepared an easy-to-use press release [.doc] you can customize and send to your local press. Please let them know about your trip to spread the word to more families about this opportunity to learn about research that makes a difference.
 
View and edit Release [.doc] to print and send to your local media     
Defeat Autism Now! Webcasts
Streaming Online

Videos from past Defeat Autism Now! Conferences - including our most recent conference in Cherry Hill, NJ - are available. This is an online video streaming service that allows anyone to view conference presentations for free. (We rely on the generosity of our donors to make this possible, and if you enjoy the presentations we hope you'll help support this service.)

Go to Webcasts
 
Support Offered for Families Affected by  Natural Disasters 
AutismCares - a consortium of leading autism organizations that join together to support those with autism and their families during natural disasters or other catastrophic life events - is seeking families affected by Hurricane Gustav. Families can call the Autism Response Team at 1-888-Autism2 (288-4762). 
Phoenix Zoowalk Set for Oct 18th  
 
zoowalk - phoenix
 
We hope you'll volunteer to walk--virtual walkers are welcome!--or sponsor a walker, to help fund research that makes a difference. 
 
Proceeds from the Phoenix Zoowalk go to fund Autism/ Asperger's treatment research at Arizona State University, and at ARI.
  
Details  
 
Questions?
Call: 480-831-2047
 
Caregivers Urged to Register Loved Ones
Tissue Bank for Developmental Disorders and ARI Provide Ongoing Registration to Advance ASD Research  
 
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
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.
Treatment Ratings
Conference Webcasts
Now Online: Autism Discrimination Site
 
The Autism Research Institute is pleased to announce the release of its new website autismdiscrimination.com.
 
The site highlight
s the work of the Autism Human Rights and Discrimination Initiative - a task force created to address human rights violations and discrimination against persons with autism and other cognitive challenges internationally.
 
The website is intended to demonstrate to parents, physicians, and research scientists that recovery is a reality for a significant percentage of children with autism. 
 
Share Your Story of Discrimination
ARI calls on governments, corporations, and community agencies to help people with autism thrive and feel accepted as part of society, rather than be subjected to the blanket discrimination and exclusion that stem from widespread ignorance. 
 
Caregivers: Read and share personal stories of discrimination   
 
Articles:
 
Update Your ARI E-News
Registration
Response Requested 

We're updating the Autism Research Institute e-newsletter mailing list.
 
Please take a moment to help us place you on the correct regional e-mail list by providing your location information. 
 
Our Partners
Autism Society of America 
 
Generation Rescue
 
Medigenesis: A New Beginning in Medicine

 
mindd
 
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 contact us.
 
Contributing Editor:
Jane Johnson
 
Technical Support:
Denise Fulton
 
Additional Assistance:
ARI maintains 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:
 
edelson
ARI's big three-day Defeat Autism Now! conference is set for October 24-26 in San Diego. Unlike previous conferences, two full days will be dedicated to scientific presentations on biomedical topics, concurrent with presentations geared toward parents.
 
On October 18th, ARI and Arizona State University will co-sponsor a major walk for autism in Phoenix. What sets this walk apart is that it will be held at a gorgeous zoo; all of ARI's proceeds will be used to fund research on autism treatments. Visit: www.Zoowalk.com
 
We've received a great deal of positive feedback about our new website,
www.AutismDiscrimination.com. I would like to thank the many people who have contributed their stories of human rights violations and discrimination.  These will be an 'eye-opener' to many people, including the media.
 
November 1st and 2nd, ARI will host the opening of the Edgeware Gallery, housed in the same building as ARI. Mark Rimland will be the resident artist. Proceeds from the sale of the artworks will be used to fund research on effective treatments, so if you live in the southern California area, mark these dates on your calendar and plan to join us.

Regards,
Steve Edelson, Ph.D.

Director, Autism Research Institute
"We were trying to find what he found,"
Lipkin said.
Odd, then, that they didn't look at the same type of kids.
By Jane Johnson, Executive Director of Defeat Autism Now! 
 
jepsonA recent paper titled "Lack of association between measles virus vaccine and autism with enteropathy: a case-control study" by Hornig, et al. (PLoS ONE. 2008 Sep 4;3(9):e3140) has been represented as the final word in the controversy about whether or not there's a link between autism and the MMR vaccine. 
 
Curiously, the authors write, "Failure to replicate [Wakefield's] original study design may contribute to continued public concern with respect to the safety of the measles, mumps, and rubella (MMR) vaccine." 
 
They were referring to past MMR-autism studies, which looked for measles genetic material in the blood, as opposed to Wakefield's tissue biopsies. It's curious because in fact Hornig, et al. did take a step in the right direction-they looked at tissue biopsies-but the pretense that their study is a replication is just plain wrong.

In Wakefield's 2002 study, researchers found measles in 75 of 91 biopsies from autistic children with GI inflammation, and in only 5 of 70 samples from non-autistic children (Uhlmann, et al. Mol Pathol. 2002 Apr;55(2):84-90). The children with autism in the 2002 study developed gastrointestinal symptoms and autistic regression after the MMR vaccine.

Only 5 of the 25 children in the Hornig study group developed these symptoms after the MMR vaccine-all of the others showed symptoms of autism before vaccination; so only those five are fair to compare to the 2002 study. (This is like testing whether cell phones cause cancer by comparing 20 people who had cancer before they ever touched a cell phone to five people who developed cancer after owning one.)
 
Anyway, common sense is enough to tell us that a study group of five isn't large enough to reveal much of anything, no matter what's being tested.
 
Notably, biopsies in Wakefield's study were taken from the ileum, since this is the only site in the lower intestine where he had found evidence of measles virus protein in earlier studies. In contrast, Hornig's biopsies came from the cecum (part of the colon) or the ileum, and we are given no indication of how many of the uniquely relevant ileal biopsies were actually used. (The discrepancy arises because some doctors find it difficult to get into the ileum and--as in this case--are left having to settle for colonic biopsies.)
 
Both reflux symptoms and food allergy were other factors that emerged in the Hornig study group, but there was no mention of diarrhea or constipation, the two GI symptoms most common in the 2002 UK children. So the populations under consideration appear to be very different, a fact that the Hornig group apparently decided to ignore, or simply overlooked.
 
Paradoxically, Hornig's study affirmed results from the laboratory of Professor John O'Leary (he's one of the collaborators on the new study, as well as senior author of the 2002 study) as correct, and identical to results obtained by the other laboratories used in this new study (Centers for Disease Control and Prevention [the CDC] and Dr. Ian Lipkin of Columbia University), inadvertently validating the results obtained from lab work done in the earlier, Wakefield study.
 
Northeastern University Professor Richard Deth commented, "If gut inflammation persists after the virus is cleared, it is a sign that the inflammatory response has not been reversed (i.e., oxidative stress persists). In my view, this is the central issue in autism: persistent, unremitting oxidative stress, which can be triggered by different exposures. In other words, all children experience an inflammatory response to the MMR, which is part of why vaccination works. The response is normally mild and self-limiting, but children with redox and methylation vulnerabilities have a stronger inflammatory response that frequently does not turn off, yielding persistent oxidative stress." 
 
In other words, there is a plausible connection between MMR and ongoing tissue damage.

This new study rules out just one thing: that the measles virus must remain active in the intestine for the long term for us to be able to say that it can cause the bowel disease that is associated with autism. The question remains, could the MMR vaccine cause autism in a one-time injury, without necessarily leaving evident measles virus behind?  We don't know. 
 
More research is needed. Parents of children who regressed after their MMR vaccine deserve a solid, irrefutable answer; sadly, by representing itself as the final word, the recent Hornig study decreases the chances that they'll get one. 
 
Jane Johnson is the director of Defeat Autism Now! and the co-author of Bryan Jepson M.D.'s groundbreaking book, Changing the Course of Autism.  
Fall Defeat Autism Now! Offers Sunday Science Sessions
 
Sue SweedoAutism Research at the National Institute of Mental Health (NIMH) - Progress and Pitfalls & Notes on PANDAS
Susan Swedo, MD
Dr. Swedo will present an overview of the investigations underway in the NIMH Intramural Research Program. She will discuss the NIMH's hypotheses, study designs, and preliminary results of investigations currently underway, including phenotyping investigations and treatment trials. Dr. Swedo will also discuss results from her previous research on Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS) as a model for investigations of autism as well as a potential therapeutic target in young children with autism. Future plans will be discussed in light of the IACC Strategic Plan for Autism Research. In addition, Dr. Swedo will discuss some of the lines of investigation that have proven to be either less fruitful, or less feasible, and will discuss the alternative approaches that are being considered in the hope of answering important questions about the etiology and treatment of ASDs. 
 
jamesAutism Research in Arkansas: On-going Clinical Trials and the Arkansas Autism Alliance  
Jill James, PhD   
Dr. James will present for the first time the metabolic and behavioral results of a 3-month open-label clinical intervention trial, testing the efficacy of methylcobalamin and folinic acid in children diagnosed with autism. She will discuss the design of an ongoing NIH-funded prospective study that is meant to determine whether reduced methylation and glutathione-mediated antioxidant/detoxification capacity precedes the diagnosis of autism; positive results would provide predictive biomarkers of autism risk, and would also provide metabolic targets for intervention in an effort to modify and possibly prevent the development of autism. In addition, she will present the study design of an ongoing double-blind, placebo-controlled study of nutritional intervention in children with autism, a study that will have metabolic, behavioral, and immunological endpoints. 
 
eliceClinical Improvement in Autism with Anti-inflammatory Therapy Directed at Nuclear Factor-Kappa B (NF-kB)
Michael Elice, MD
Inflammation is a major pathological problem among children with autism, manifested in every organ system.  The prime mediator of inflammation is NF-kB.  Medications that inhibit NF-kB have improved children with ASD in Dr. Elice's practice who did not respond to standard therapies.

JmcTreatment Approaches for Older Children, Adults, and "Non-Responders"
Jaquelyn McCandless, MD
A broad-spectrum biomedical approach as proposed by Defeat Autism Now! is bringing improvement--and even recovery--to unprecedented numbers of ASD persons, as we keep learning more about this multi-faceted disorder. It is clear that autism is treatable, that the earlier a start is made the better, and that it is never too late to start helping these medically ill persons gain better health.  Strategies will be presented for those who have made a late start, as well as for those who previously did not seem to respond to biomedical treatments.  
 
Andy WakefieldThe Natural History of Autistic Enterocolitis; Serologic and Histologic Markers of the Inflammatory Bowel Disease
Andrew Wakefield, MB BS FRCS FRCPath
Dr. Wakefield will discuss what he has learned about autistic enterocolitis in the last decade, including its relationship to Crohn's disease, the change in disease status over time, and the relationship between serologic and histopathologic status.
Autism Life Skills On Shelves this Month
Portion of Book's Proceeds to Benefit ARI  
 
Autism Life Skills BookAward-winning Southern California author, Chantal Sicile-Kira, is launching her new book, Autism Life Skills on Monday, October 6th in Del Mar California. Ms. Sicile-Kira will also use the event to promote the US launch of the international magazine, The Autism File
 
Sicile-Kira's third book, Autism Life Skills: 10 Essential Abilities Every Child Needs and Deserves to Learn, was inspired by her 19- year-old son, Jeremy, who was highlighted on MTV's True Life, in the award-wining episode "I Have Autism." Jeremy attends Torrey Pines High School and is working towards graduating in 2010. 

Autism Life Skills presents a positive and empowering "bill of rights" for every person with autism, regardless of impairment level.
 
"I wanted to give people a message of hope and strength," explained Chantal. "Life is not easy for someone as impacted by autism as my son is. Yet, Jeremy looks at the reality of his life and does not see tragedy. He has a strong sense of self. He realizes he is dependent upon others who are skilled in helping him reach his goals, but he knows that it doesn't make his life any less valid than yours or mine."  
 
With advice and reflections from autistic adults across the spectrum, as well as Sicile-Kira's own experience as an advocate and parent, the book covers 10 essential life skills including communication, safety and self-esteem.

Book Benefit set to Donate to ARI
The Ranglas family, owners of the Poseidon Restaurant (hosting the launch event) is donating 20 percent of the money spent in the lounge from 4-7 p.m. Oct. 6th to the Autism Research Institute, based in San Diego. Barnes and Noble will be there selling Sicile-Kira's book, Autism Life Skills, as well as The Autism File Magazine.
 
For every book sold, Sicile-Kira will donate $1.00  to the Autism Research Institute. 
  
For more information, visit 
Chantal Sicile-Kira's website.
 
ARI thanks Chantal Sicile-Kira for and Poseidon Restaurant for their generous support.  
Fund Research that Makes A Difference
 
  donate
ARI's work relies on charitable contributions from concerned individuals and organizations. We are proud to be the only national autism non-profit to be awarded the coveted 'Four Star Award" by Charity Navigator for sound fiscal management. All donations are tax deductible; ARI is a 501(c)(3) organization, Fed ID No. 95-2548452.
New Books, Publications
 
Mother Warriors - Jenny McCarthy
warrior momsJenny McCarthy - actress, comedienne, model, mother, and author of four New York Times bestsellers - shares recovery stories from parents in her latest book: Mother Warriors.

When Jenny McCarthy published Louder Than Words, the story of her successful efforts to save her son, Evan, from autism, the response was tremendous. It hit #3 on the New York Times bestseller list, and Jenny and Evan were featured on magazine covers, including People. But what she hadn't anticipated was the overwhelming response from other parents of autistic children, who sought her out to share their stories.

In her new book, Jenny expands her message, to share recovery stories from parents across the country. Mother Warriors shows how parents fought to find their child's perfect "remedy of interventions," and teaches parents how to navigate safely through the many autism therapies.

Along the way, Jenny discusses her own journey as an autism advocate and mother, as well as the progress of her son. Emotional and genuinely practical, Mother Warriors will inspire a generation of parents, with hope. 
 
###
 
Hope for the Autism Spectrum - Sallie Kirk

Sallie KirkWhen Sally Kirk's son, Will, was diagnosed with an Autism Spectrum Disorder (ASD), she did everything she could to understand his condition and to find ways of improving his quality of life. In this book, Sally shares the story of her journey with Will, and how her discovery of biomedical interventions significantly improved his behavior and changed their lives for the better.

Based on personal experience and extensive biomedical research, the book explains how important it is to understand both the child's mind and body, and explores how when underlying physical problems are treated, brain function and troublesome behaviors often improve. It describes in depth the most common physical problems for those on the autism spectrum and the variety of treatments available, such as minimizing exposure to heavy metals and toxins, alterations in diet, and use of vaccinations.

This positive, practical book tells a story of personal hope and provides a wealth of essential information on biomedical interventions for parents of children on the autism spectrum. It will also be a useful resource for therapists, medical professionals and adults with autism-spectrum diagnoses.
 
 
The Autism File now on North American Newsstands  
 
afileThe Autism File, a long-established and leading international journal covering all aspects of autism, hit 2,000 bookstores throughout North America this month, including Barnes & Noble, Borders, Books-a-Million, Chapters, Indigo Books & Music, Coles and Presse Commerce.
 
ARI's Director, Steve Edelson, PhD sits on the publication's scientific advisory board.
 
The Autism File provides practical information covering medical, nutritional, and educational matters. It tracks and reports on research and focuses on applications today and the solutions that may be coming soon.
 
The publication is written by parents, doctors, consultants, teachers--anyone in the field of autism who has anything to say on any subject concerning autism.

It is also available worldwide by subscription, and in the UK through WH Smith, Borders, Sainsbury's, selected Tesco Superstores and leading newsagents.
 
Learn more:  
The Autism File Website
Subscribe
ARI's Million Dollar Puzzle Update 
puzzle pieces 
Autism Puzzle Pieces Distributed:
1,895 packets = 102,750 puzzle pieces 
 
Locations: 43 states, Singapore, and two locations in Canada (294 cities).
 We are not yet in Hawaii, Montana, Nevada, New Mexico, North Dakota, Utah, or Wyoming.
 
A Success Story from Project Chairman Lynda Huggins: 
I want to share with you the story of how a wonderful grandmother is raising money for the Million Dollar Puzzle. Our Puzzle Piece Committee's own Daryl Files has been attending autism support group meetings and functions in her area to promote the puzzle pieces. At a recent meeting Daryl met a dedicated grandmother - Ginnie Russo  - whose grandson has autism, and gave her a packet. Ginnie said she'd take a packet of 50, "even though I'm not good at fundraising."  
 
Ginnie went home and wrote a letter - with a picture of her grandson - to friends and family and asked each of them to support research that makes a difference. She reached out to more than 80 friends and family members on August 2nd.
 
We're deeply grateful she did.
 
In the weeks that followed, she and her husband, Rick, have forwarded 17 checks to the Puzzle Piece Campaign totaling $650. By mid-September she sent 25 more checks for an additional $700! And the responses keep coming in.
 
Thank-you Rick and Ginnie Russo - you produced a missing piece! 
 
 
 
Want to Start Your Own Puzzle Piece Campaign?
Request puzzle pieces online and the Puzzle Piece Project committee will send you packets of 50 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. Lynda's goal: "Let's put these puzzle pieces across the entire US and support the research we all want and need."   
 
Events in the Community ...
 
Autism Conferences of America Plans two Fall Conferences for the Northeast
 
acaNew York City Autism/Asperger's Conference
Oct. 11-12: Educating & Healing Children with Autism
The conference is featuring many great  speakers - appropriate for both parents & professio
nals.
Where: Stephen Gaynor School, 148 West 90th St., New York  
  
Massachusetts Autism/Asperger's Conference
Nov. 1-2: Successful Inclusion in School & Community
Featuring a leading clinician who uses t
he Defeat Autism Now! approach. The conference includes many great speakers - appropriate for both parents & professionals! 
Where: Regis College - Fine Arts Center, 235 Wellesley Street, Weston (near Boston)
Early-bird registration is available through Oct. 15

###
 
National Autism Association Conference in Fort Lauderdale, Nov. 13-16
 
nacThe National Autism Association (NAA) is pleased to present its National Autism Conference November 13-16, 2008 at the beautiful Hyatt Bonaventure Resort in Fort Lauderdale Florida.  
 
Speakers include Congressman Dave Weldon, Dr. Jon Poling, Dr. Andrew Wakefield, Dr. Doreen Granpeesheh, Dr. Anju Usman, Dr. Boyd Haley, Dr. Jeff Bradstreet, Dr. Dan Rossignol, Dr. James Partington and many more!  
 
Featuring a first-of-its-kind "Just For Dads" Workshop: "It's Dad Time: A Seminar on Parenting, Playing, and Coping for Fathers of Children on the Spectrum" with Dr. Jonathan Tarbox

Parenting is the toughest job anyone can have. The hopes, fears, anxiety, exhaustion, frustration, and happiness that parenting brings are unmatched by any other human activity.  
 
In this seminar especially for fathers of children on the autism spectrum, we will discuss strategies for successful day-to-day parenting, ways to have more fun with your kids, and strategies for coping with the challenges you face. Let's face it, moms often do much of the parenting and often get the most recognition for it, but dads have a unique experience that's also challenging and stressful. This seminar is designed to address some of the things that make a dad's experience different from a mother's.
 
Dr. Jonathan Tarbox is currently the Director of Research and Development at the Center for Autism and Related Disorders. For  information and registration, please visit: www.nationalautismconference.org     
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