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April 2008
ARI logo
In This Issue
Medigenesis Empowers Parents, Clinicians
Mitochondrial Disorders and Autism
Puzzle Pieces Sweep the Nation for Autism Awareness Month
ARI Research Keeps Rimland Vision Alive
Age of Autism Brings Light to 'Story of a Lifetime'
Steve Edelson to 'Bounce for Autism'
Defeat Autism Now
Spring Conference
Cherry Hill, NJ
April 3-7
 
  • register

    ----------------------
    2008 Events
    Autism One - Defeat Autism Now! Clinicians' Seminar - May 22, Chicago, IL

    ASA National Conference
    - Track for Parents - July 10
    Orlando, FL

    Fall Defeat Autism Now! October 23-27, San Diego, CA

  • medigenesis
    Empowering Parents and Clinicians
    Database matches symptoms with thousands of others 
     
     
    Medigenesis.com is a "library," where instead of old books you will find a group of children like yours, through anonymously shared experiences. The children are similar to yours not only because of a diagnostic label, such as autism, PDD, asthma, or colitis, but because of a history and medical likeness.  You can easily find those who are most like your child, so that you can then consider data that tells you what treatments worked well for a group of children closely matched to your own.
     
    Families are currently invited to join a free beta-trial courtesy of Medigenesis. Read More
     
    Science Behind GF/CF - Flyer for Caregivers

    All too often, teachers, relatives, and neighbors sneak forbidden foods to our kids. To provide parents with a tool to dissuade "friendly fire," ARI created a brochure called "Why my Child is on a Special Diet."
     
    We'll be handing the brochures out at the Cherry Hill, NJ Spring Defeat Autism Now! Conference. 
     
    For those unable to attend the conference, we linked a printable version of the brochure to our homepage at Autism.com.
    Updated Treatment Ratings at Autism.com
    The parents of children with autism form a reservoir of information on the benefits, as well as any adverse effects, of the various drugs and other interventions that have been tried with their children. The Autism Research Institute has been collecting these ratings since 1967, from more than 26,000 parents.
     
    Our Partners
    Autism Society of America 
     
    Generation Rescue
     
    Medigenesis: A New Beginning in Medicine
     
    NAA
     
    safeminds
     
    Schaefer Autism Report
     
    TACA
     
    Treating Autism
     
    Unlocking Autism

    Events In the Community...

    Autism One Announces Recovery Rising
    Wednesday, May 21-Sunday, May 25 at the Westin O'Hare Hotel (Chicago area)
    Autism One 2008 features the Defeat Autism Now! Clinician Seminar, Thursday, May 22. 
    The Clinician Seminar is a project of the
    Autism Collaboration, the mission of which includes identifying and implementing the most innovative ideas to help our children get better, faster.
     
    ASA Announces its 2008 National Conference
    July 9-12, 2008, at the Gaylord Palms Resort and Convention Center in Orlando, Florida Register online

    ASA offers continuing education credits for:
    Behaviorists (BCBA credits) Hearing & Speech Professionals (ASHA credits)
    Medical Professionals (CME credits)
    Educators (Certificates of Attendance)

    Ph. 301.657.0881-ext.110
    Learn More 
    Join Our Mailing List
    Visit our Web site:
     
    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
     
    Editor's Note: Going forward, we are changing the datestamp on the ARI e-news to indicate (in advance) the month of release. For example: this e-news, released March 28, 2008 covers the month of April, 2008.
    Steve Edelson 2008Autism Research Institute continues to be the matrix of best thinking about the autism spectrum.
     
    Our Defeat Autism Now! (DAN!) Conference is scheduled for April 3-6, and based on early registration numbers, this is  the largest yet. ARI is also holding a two-day Think Tank next week, during which leading researchers and clinicians will discuss emerging research findings as well as the current state of clinical issues.

    I would like to thank ARI's Defeat Autism Now! Executive Committee for their work to enable children and adults with ASDs to receive safe and effective scientifically-based interventions.
     
    Regards,
    Steve Edelson, Ph.D.
    Director, Autism Research Institute
    Mitochondrial Disorders and Autism
    It has recently been revealed to the public that the government conceded a "vaccine court" case to the Poling family as a result of their claim that vaccines triggered their daughter's autism. While representatives of the government acknowledged that vaccine damage resulted in neurological damage with "autism features," they suggested (perhaps erroneously) that this was an unusual case, i.e., a child with autism with a preexisting mitochondrial disorder. The child's father, Dr. Poling (a neurologist), is the first to admit that the case raises more questions than it answers; little enough is known about mitochondrial disorders, and even less about their role in autism. Mitochondria are tiny factories that use chemistry to produce energy within cells, but their study is exceedingly difficult, even when they function normally.
     
    mito
    Although studied since the 1940s, a mitochondrial disease wasn't diagnosed in a patient until 1959. We now know of about forty such diseases. Most feature some degree of inability to efficiently produce energy within cells, a process that requires hundreds of chemical reactions. The byproducts of disordered fuel metabolism can accumulate within cells, causing damage and a variety of symptoms. Depending on what kinds of cells are involved, mitochondrial problems can result in muscle weakness, poor growth, gastrointestinal disease, loss of vision, seizures, and developmental delays. Just as cells are protected by an outer membrane composed of fat molecules (a lipid membrane), so are mitochondria protected inside the cell by their own membranes. This series of protective structures makes mitochondrial chemistry (and impairments to that chemistry) difficult to assess. Often, impaired mitochondrial chemistry has to be significant for us to see evidence in blood or urine.
     
    Medical texts make distinctions between 1) disorders that are central to mitochondria and 2) disorders that may involve mitochondrial chemistry but that originate elsewhere, or 3) that principally affect other parts of cells. Severe, chronic lactic acidosis can be an example of mitochondrial disease, and if this were the case, a pathologist would expect to find "ragged red fibers" upon examining muscle tissue from someone with this disease. Many mitochondrial diseases have known genetic origins, but some are due to acquired chromosomal damage from toxic exposures (which might be passed on to offspring, i.e., epigenetic), and some are of infectious origin.

    In contrast to this, mild elevations of lactic acid and pyruvic acid as measured in blood or urine might result from exposure to mercury or arsenic or from vitamin B1 (thiamin) deficiency. These latter problems can cause varying degrees of mitochondrial dysfunction, but they aren't considered "mitochondrial disease" in medical textbooks, and they cause significant trouble in other parts of cells besides mitochondria. (The best descriptive terms for these examples are "mercury toxicity" or "arsenic toxicity" or "functional deficiency of thiamin.") The line between "disease" and "dysfunction" can be a blurry one, and obviously this distinction is of limited significance to parents of children with ASDs.
     
    As of this writing, reports on Hannah Poling's mitochondrial disease are conflicting and controversial.
     
    The subset of autistic cases that has been known to be coincident with mitochondrial disease is small. In 1985, for example, only four cases of autism with chronic, severe lactic acidosis were known. While the number of cases surely is higher now (plus there are many other types of described mitochondrial disease), the total percentage is unknown. Many neurologists scoff at the notion of any mitochondrial problem other than true (genetic-based) mitochondrial disease. But it is reasonable to assume that there is a continuum of dysfunction/disease, and that many children have latent metabolic issues similar to Hannah Poling's, leading to autism when triggered by toxic or infectious insults.
     
    What about mitochondrial dysfunction in which associated chemistry is inhibited elsewhere in the cell? What about subtle abnormal chemistry that's hidden from detection in blood or urine testing? And how many possess "benign genetic variants" in their mitochondrial chemistry that become pathologic when challenged immunologically or toxicologically? We don't know, but we want to find out.
     
    Clinicians who subscribe to the Defeat Autism Now! diagnostic and treatment philosophies often order some laboratory tests that might yield telltale signs. While not foolproof, they can yield clues to subtle mitochondrial dysfunctions. For instance, on an organic acid test (urine or blood) elevated adipic and suberic acids can mean that mitochondrial ability to extract energy from fat molecules is hindered.
     
    Sometimes, oral supplements of L-carnitine are helpful for this. Organic acid tests assess levels of substances that are part of the energy-transfer mechanism of the mitochondria. (Citric, malic, fumaric and alpha-ketoglutaric acids are some of these.) As mentioned above, pyruvic acid is important too, because it's part of the chemical doorway into this energy-transfer chemistry. When that doorway is blocked (by mercury, arsenic, or not enough thiamin), lactic acid or lactate may accumulate, along with pyruvic acid, so these factors are typically included when organic acids are assayed. There is also a urine test for a substance called methylmalonic acid (MMA). Urine MMA is one of the most important telltale signs for mitochondrial dysfunction; clinicians have informally reported between 30% and 60% occurrence of elevated MMA on urine organic acid tests of patients with ASD.
     
    We have invited Derrick MacFabe, MD, Director of the Autism Research Group, U of Western Ontario, to present his research on propionic acid excess and disordered mitochondrial chemistry in autism (a model) at our upcoming DAN! Conference in Cherry Hill, NJ. This presentation will be during the Science Session, April 5th 2008.
     
    So, we're hot on the trail of chemistry-gone-wrong in autism, in cells and in cell mitochondria. We will keep you posted!
    Puzzle Pieces: Turnkey Project Sweeps the Nation for Autism Awareness Month 
    Order yours today to get in on the Million Dollar Puzzle 

    ARI depends on donations and support from the community to fund research for treatments that make a difference for individuals living with autism today. The Million Dollar Puzzle is an initiative to fund research through the Autism Research Institute, and keep Dr. Rimland's visionary work alive. We are solving the puzzle of autism by linking individuals, villages, towns, cities, states and countries with Puzzle Pieces. Read More

    Update from Coordinator Lynda Huggins (Mar 27):
    "As of now I have distributed 1,051 packets; that's 52,550 puzzle pieces! We are now in 39 states & Canada, 179 cities. Many people are ordering 600, 900 or 1000 for April events. We have almost exhausted our supply of puzzle pieces. On Monday we ordered another 50,000!"
     
    How to Help
    Contact Lynda - she 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 U.S. and support the research we all want and need." E-mail Lynda Huggins
     
    Saturday Night at Defeat Autism Now! 
    Join Us in Cherry Hill, NJ on Saturday, April 5

    ChuckJoin us Saturday night at the conference for comedian Chuck Burks' stand-up routine - Actor/Writer/Comedian, with a BA in drama and mathematics from the U. of Va. and an MFA in acting from Columbia U., he has written for The Dave Chappelle Show and performed with some of the best (Chris Rock, Conan O'Brien). Most recently he was in the film "Get Rich or Die Tryin" with rapper 50 Cent. His style of comedy is clean and family-friendly. He comes to us with first-hand knowledge of the shoes we walk in, as one of his children is on the spectrum. We know you'll enjoy him especially at our Saturday night tapas and dancing wingding, so don't miss the fun!

    7:30-11:00: Reception
    Relax and unwind at the Saturday Night Tapas Buffet. In addition to an array of delicious dishes (including some gf/cf and SCD items), there will be a DJ who has a special talent for getting people on the dance floor.  (Cash bar.)
     
    A few of the items on the tapas menu:
    Imported and Domestic Cheeses and Fruit
    Olive Tapanade, Hummus, Baba Ghanouj
    Warm Artichoke and Spinach Dip with Goat Cheese
    Sliced, Grilled Breast of Chicken with Lemon and Rosemary
    Pesto Pasta Salad, Lentil Salad with Grilled Sausages and Shrimp, Grilled Petite Salmon Fillets with Ginger and Lime
    Assorted Mini Pastries, Eclairs and Cannolis
     
    crown plaza
    Need Help Getting There?
    For assistance registering for the Spring Defeat Autism Now! Conference, hotel accommodations, or airfares, please call our Toll Free number 1-866-208-0207. Office hours: 9 a.m.-5 p.m. Eastern Time.
     

    For registration assistance or questions regarding topics, speakers, which sessions are right for you, etc.   
    For assistance with your travel needs:
    ARI Research: Making a Difference for Families Living with Autism Today  
    ARI Sponsored Studies Perpetuate Dr. Rimland's Vision
     
    The Autism Research Institute (ARI) conducts, sponsors, and supports research on the underlying causes of and treatments for Autism Spectrum Disorder (ASD).
     
    In order to provide parents and professionals with an independent, unbiased assessment of causal and treatment efficacy issues, ARI seeks no financial support from government agencies or drug manufacturers. Our founder Dr. Bernard Rimland would often say, 'Research that makes a difference!' to remind us of the need to focus on what might be beneficial for people with ASDs here and now.
     
    In 2007, ARI funded more than a dozen research studies. A sampling of titles - to name just a few - included:
    • Markers of Inflammation and Oxidative Damage in Autism
    • Rising Glutathione levels in Children with Autism
    • Improving the quality of life for people with autism and their families by integrating biomedical and behavioral approaches to address pain and illness
    Age of Autism
    Brings Light to the 'Story of a Lifetime'
    dan olmstedThe Autism Research Institute is proud to co-sponsor The Age of Autism - the nation's first daily Web newspaper for autism's environmental-biomedical community - those who believe autism is an environmentally induced illness, that it is treatable, and that children can recover.

    Age of Autism is edited by Dan Olmsted - a former senior editor from United Press International - who in 2006 named ARI's founder Bernard Rimland the Person of the Century for the prescience of his 1964 book, "Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior" in which Rimland concluded that medical treatment could help many autistic kids. Olmsted left UPI last year to dedicate his time to covering the autism epidemic: "I am not a social worker or an autism parent, I'm a journalist drawn to what I called, in my last UPI column, "the story of a lifetime."

    Olmsted teams with Managing Editor Kim Stagliano - mom to three daughters with autism - and editors-at-large J.B. Handley of Generation Rescue and Mark Blaxill.
     
    "It's a privilege to be part of Age of Autism," Stagliano said. "We've built a community of thousands of readers since we launched in November, 2007. The commenting capability is my favorite feature, so we can learn first hand what other families are going through in order to help. Politically, we've made an impact. The 'powers that be' have taken notice. And that's good!"
     
     
    Submissions
    Age of Autism welcomes relevant submissions that are appropriate for its readers.
    ARI Director to 'Bounce for Autism'
    Steve Edelson Heads Up "Sock Squad" in Oregon April 11th
     
    bounce for autismThe Autism Society of America and Pump It Up, a national franchise of giant inflatable indoor playgrounds for private parties, are pleased to announce the launch of "Bounce for Autism," a new fundraising event that combines family fun with raising awareness and support for autism.

    Kids, families, and friends of all ages will "bounce" at a Pump It Up location, and the proceeds will support autism. Participants form a "Sock Squad" - a team of bouncers who raise funds from friends and family, similar to sponsored Walks and Runs. Best of all, "Bounce for Autism" gives people on the autism spectrum the chance to support their own cause and head their own teams in a safe, supportive, and fun environment.
    On Friday, April 11th Dr. Steve Edelson, ARI Executive Director and ASA Board member, will bounce in Beaverton, Oregon (Portland area).  He is looking for people to join his "Sock Squad." 
     
     The name of his squad is "Steve Edelson's Sock Squad," and his password is "Oregonian." (If you cannot attend the event, you can still become a virtual member of Dr. Edelson's squad.)

    Donations are very much appreciated--please support his effort!
     
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