Aside from fulfilling my dream of being trapped in a Sunbeam toaster, do you think this Far Infrared Sauna works for our kids - at just $300? From The SharperImage. 

The American Academy of Pediatrics has never embraced or even feigned curiosity for medically treating autism to improve childrens' lives. In fact, they have actively worked against families desperate to help their kids. For decades. Below, Safeminds reports that they have distanced themselves even further, denying medical testing for metals, mold and other environmental exposures. This is a travesty. The AAP toolkit has two things in it - psych meds and referrals to early intervention or school. The doors seemed to have fully closed on the era of autism as a diagnosis that needs any attention. What a sin. AAP - Vaccinate. Medicate. Abdicate.

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Association Claims No Need for Metal, Mineral, or Environmental Toxin Assessments

The American Academy of Pediatrics’ Council on Environmental Health has urged pediatricians and families across the country to stop using several clinical tests for children with autism and other related disabilities. This recommendation, among others, is included within a broader campaign called “Choosing Wisely,” which encourages evidence-based health care that is considered truly necessary and does not duplicate or harm. The American Academy of Pediatrics (AAP) now believes that urine testing of children with autistic behaviors for metals or minerals is unnecessary. They also frown upon analyzing hair for environmental toxins for the same cohort of children. Additionally the AAP has called for the cessation of chelation challenge urinary analyses for children with suspected lead poisoning. Mold sensitivity testing was also in the organization’s crosshairs. They feel it should only be reserved for children displaying distinct allergy and asthma symptoms. Furthermore, the campaign’s recommendations indicate that, in most cases, pediatricians should not use measurements of environmental chemicals in blood or urine to make clinical decisions. A spokesperson for the AAP’s Council on Environmental Health stated that tests or treatments claiming to diagnose childhood diseases based on chemical measurements may be misleading or based on a false premise and believes that parents should rely on pediatricians to address concerns about chemical exposures.

Original Article

TONIGHT!  Register at DrTenpenny.com

 

You may have heard about Spelling 2 Communicate, a letterboard system. JB Handley's book Underestimated An Autism Miracle shares his son's amazing journey from a classroom for the intellectually disabled to the stars. TACA has an online tutorial running through the end of the month. We expect a rain out Memorial Day here in Connecticut - a perfect chance to see if S2C might be appropriate for your preverbal or newly verbal child of any age.
 
Register Here.

Virtual learning isn't just for the kids!  October 1 - 21. 2020

REGISTRATION NOW OPEN

The National TACA Autism Conference - Virtual will include educational presentations on research, treatment options, therapies and more, accessible to you via video lecture portal. Presentations cover all aspects and levels of the autism journey including topics of diet and nutrition, therapies, beginner and advanced medical treatments, IEP, navigating adulthood, and much more.
What can you expect at this Virtual Conference

New from Safeminds:

Scientists from the University of Sheffield and University College London have made a breakthrough in understanding the formation of the enteric nervous system (ENS) of the gastrointestinal (GI) system. Dysfunction of the ENS is linked to a wide range of conditions such as Parkinson’s, Hirschprung’s disease and autism. The scientists were able to generate enteric neurons in the lab using human pluripotent stem cells and successfully implant them into mice engineered to lack an ENS. The neurons took hold in the mouse GI tract and became functional. The findings pave the way for new regenerative treatments for GI diseases in humans.  Read more here.

Note: Our Teresa Conrick has written about the microbiome and possible treatments that could help the autism community for several years. You can read her body of work here.  During this quarantine, seems we could all benefit if the drug indeed reduces irritability, anxiety and social withdrawal.  Stay well. Stay safe.

From Safeminds:

April 09, 2020 Axial Biotherapeutics Drug Passes Safety Test, May Reduce Irritability, Anxiety, Social Withdrawal

Results of a novel microbial-inspired drug study look promising at reducing the core symptoms of autism. Adolescents with the condition had lowered scores on irritability, anxiety and social withdrawal while on the medication. 

The drug, called AB-2004, works on the gut-brain axis. Communication between the bacteria in the gut and the brain impacts the way the brain develops and functions as well as behavior. The composition of the bacteria and other organisms of the autistic gut microbiome differs from those without the disorder.

AB-2004 removes harmful metabolites such as 4-EPS from the gastrointestinal (GI) tract that are generated from certain kinds of gut bacteria. These metabolites can create a leaky gut allowing harmful substances to enter the bloodstream and then the brain, affecting brain function. This could lead to symptoms of autism. 

In this just-completed early phase human clinical trial, Axial reports the study met the primary endpoints of safety and tolerability with no drug-related adverse events noted. Adherence to the three-times-per-day dosing regimen was greater than 90%. The drug can be administered by mouth. 

Significant reductions in plasma and urinary levels of several key microbial metabolites were observed, which indicate that AB-2004 is positively acting on the lining of the gastrointestinal tract. On the behavioral outcomes, Axial reported that –

• Significant improvements in irritability scores based on the Aberrant Behavior Checklist were observed, particularly in subjects with more severe baseline scores.
• Significant improvement in anxiety based on the Pediatric Anxiety Rating Scale were observed in subjects with more severe baseline scores.
• Improvements in social withdrawal scores based on the Aberrant Behavior Checklist were observed, particularly in subjects with more severe baseline scores.

Twenty-six teenagers with autism were part of the study, which was an open-label design without a control group. Treatment lasted for 8 weeks. The study was conducted in Australia.

In an earlier study by Axial using an animal model of autism, AB-2004 “demonstrated the ability to repair leaky gut and improve repetitive behavior, anxiety, and ASD-related sensorimotor gating deficits by removing key microbial metabolites” in a mouse with autistic-like features.

Last year researchers at Arizona State University reported that Microbiota Transfer Therapy (MTT) using healthy, neurotypical donors led to long term improvements in autism-associated symptoms in children with the disorder. These researchers are now enrolling adults with autism for a clinical trial of MTT.   Read more at Safeminds here.

 

A unique online event for parents that will help you identify opportunities to help your child.  June 11 - 20.

Having a child with Autism, ADHD or Sensory Processing Disorder is challenging. Figuring out what to do to help them is just as challenging. Join us for 10 days of eye-opening information into the root causes of your child’s neurological dysfunction. Imagine learning about what may have caused their symptoms and how to address them with nutrition, biomedical and leverage the power of positive neuroplasticity to improve function, health, and their lives.

Autism & Sensory Processing Disorder Summit

NOTE We suggest you bookmark the Generation Rescue blog as a great resource.

Team GR: Magnesium is a essential mineral we keep in our supplement cabinet. How critical is it for individuals with autism? We brought in one of our supplement experts, Jared Skowron, ND, to help us crack down the importance of taking magnesium!

Magnesium — Don’t Forget About Me!

Written by Dr. Jared Skowron

Sometimes, we forget about the old things; the classics, the foundations, like magnesium. We get excited about new things in the hopes of finding the magic bullet. Sometimes when we get wrapped up in all things new, we lose sight of pillars of importance. We must remember the foundations of health and illness: Genetics, Nutrition, Toxicity.

Where to Begin

Where do we start our journey? In the past or in the present? Looking into the future? Do we first reflect on our health and life today, or reach back into our old photo albums of sepia stained square polaroids? I think today, I’m in the mood to rewind the clock 80 years….

I found an article from Berkeley Medical School published around 1937. This was an animal study analyzing symptoms of magnesium deficiency in the diet, especially related to calcium levels and Vitamin B2 levels (which they used to call Vitamin G back in the day). What interests me is the understanding of nutrition at that time. Here’s a couple quotes:

“A fixed value cannot be given for the minimum requirement of a given element. The amount required will be found to vary with varying conditions of life,…and also in relation to the intake of other components of the diet.”

“A high content of calcium in the diet increases the severity of magnesium deficiency and raises the amount necessary to meet the minimal magnesium requirements.”

Even back then, insights were given to individuality. I listen to so many parents who want to know the perfect dose, the exact number, and frankly it depends on your child. The need varies based on the individual’s health and genetics. While 100mg is right for some, 400mg is right for others. We must follow the response to a therapy individually.  Read more here.

NOTE: Seems like since Mrs. Wright's death last year, Autism Speaks has changed its mission from "It's time to listen," to "It's time to give up." What a sin. Let's live with autism. Cancer. Alzheimers. Diabetes. MD. Raise money and live with it. Disgusting in the extreme.

By Ginger Taylor, MS

Just saw a new Autism Speaks commercial. The message...

"Learn to live with it."

I kid you not. 

Autism Research Institute is presenting a Webinar tomorrow, 4/12 titled:  Immunological Issues in ASD - Gestational Influences. Register here. From ARI:

Join Judy Van de Water, PhD to learn about gestational influences on neurodevelopment.

Dr. Van de Water joined the faculty in the Department of Internal Medicine at the University of California, Davis in 1999. In 2000, she also joined the faculty of the newly formed UC Davis M.I.N.D. Institute when she began her research on the immunobiology of autism. Dr. Van de Water’s laboratory pursues research programs pertaining to autoimmune and clinical immune-based disorders including the biological aspects of autism spectrum disorders. The application of Dr. Van de Water’s immunopathology background has been instrumental in the dissection of the immune anomalies noted in some individuals with autism, and in the differentiation of various autism behavioral phenotypes at a biological level. Most notable of these is the investigation of the maternal immune system as it relates to autism spectrum disorders, with particular emphasis on the presence of highly specific maternal autoantibodies to fetal brain proteins.

Our friends at Generation Rescue are changing the lives of individuals with autism every single day. And that means changing life for entire families, for the better.  I especially love that the grants are not limited to youngsters. Many of us have older kids, my oldest is 22. And they can still benefit greatly from treatment. Thank you to Jenny McCarthy and the entire GR team. XOX

Rescue Family Grants provide autism treatment to families in financial need. The grant provides financial support, products and services for auditory listening therapy, dietary intervention training, dietary supplements, two doctor visits, and lab testing. To date, more than 700 individuals have participated in the program and report a better quality of life and improvement in speech, language, behavior, health and wellness, and social interaction. The grant is available to individuals of all ages who meet the eligibility criteria below. 

To see if you qualify for a Rescue Grant, which provides medical treatment for autism, click here.

 

NOTE: We excerpted this article by Lisa Ackerman of TACA^. Please visit and bookmark TACA as a top resource for your loved one with autism's well being, growth, safety and success.

A recent study demonstrated that a blood test might be able to differentiate children with autism spectrum disorder (ASD) from typically developing children.¹ The study examined one carbon metabolism and its related pathways. These pathways are of the upmost importance in ASD and are essential for many critical processes in the cells of the body, including methylation which regulates turning genes on and off, producing the precursors to genetic material and producing the major antioxidant in the body known as glutathione.²

This news is not really new, however the dataset’s potential predictive ability is intriguing. Over a decade ago, Dr. Jill James, demonstrated that children with ASD have abnormal one carbon metabolism and suggested that these metabolic markers define an endophenotype (subgroup) of children with ASD.³  Furthermore, Dr. James demonstrated that several common variations in genes which provide the instructions for cellular proteins and enzymes result in an increase in the risk of developing ASD with these variations interacting in complex ways.³  This suggests several “kinks” in these metabolic pathways may add up to predispose a child to develop ASD.

We're excited to share this offer from our friends at Generation Rescue!

Registration (for all three days) for the Autism Education Summit is just $49 until Sunday! 

PLUS, when you register this weekend, you’ll also be entered to win a complete set of the BIORAY Kids line of natural detox products. 

Just use promo code: AGEOFAUTISM at autismeducationsummit.com. 

Many our of friends are using the IonCleanse system from A Major Difference.  If you are near Pittsburgh, PA, and have a child age 3 - 7, you can enroll the child in a clinical trial.

CLINICAL PROTOCOL  # SAIRB-16-0010
Measuring the effects of the IonCleanse® by AMD on children with autism spectrum disorders
Sponsored by A Major Difference, Inc.

1.    Study Synopsis
A Major Difference, Inc. (“AMD”)1 in partnership the Therapy House, LLC,2 have created an investigational study looking into the efficacy of using the IonCleanse® by AMD total body detoxification system for children with Autism Spectrum Disorders (“ASD”).  The study is a prospective study that will be using a currently marketed product in treatment of symptoms of ASD in children.   There will be no costs incurred by participants in the trial.  
This study is planned and budgeted for 60 days and 30 children. Children who meet the inclusion criteria will be randomly selected either to receive the therapy (described next) or to be entered into the control group and receive no therapy. The group will be split evenly. For those receiving therapy, they will use the IonCleanse system for the recommended time and frequencies (based primarily on age). All participants will be evaluated pre and post by professional occupational therapists who will utilize the Battelle Developmental Inventory, Second Edition3 and the Sensory Profile 24 as the measure for gauging effectiveness. Complete details are in IonCleanse Clinical Trial Information File.

Autism Treatment Effectiveness Survey

You are invited to evaluate the effectiveness of treatments for autism. Those include medications, nutritional supplements, diets, therapies, and education.

Our goal is to learn which treatments are most effective.   Survey results will be posted on our website. The information can then be used by families and clinicians to help those with autism.

For more information, go to http://autism.asu.edu

Thank you for your consideration!

Sincerely,

Prof. James B. Adams, Ph.D.

Director, ASU Autism/Asperger’s Research Program

We invite you to tune into this free autism telesummit featuring a range of treatment and parent experts.   Visit the site here!

Wednesday, July 29th, 1:00 - 2:00pm EDT:

Medical Issues in Autism

Part 1 of a two-part series: Dr. Mumper provides an evidence-based overview of medical problems often found in children with autism, so that parents and clinicians can collaborate on assessments and treatment strategies.

Learn more here.

REGISTER HERE
 
Dr. Mumper received her M.D. from the Medical College of Virginia and is board-certified in pediatrics. Prior to joining ARI as Medical Director for five years, she held a clinical faculty appointment at the University of Virginia for sixteen years. In 2000, Dr. Mumper founded Advocates for Children, her general pediatrics practice. Advocates for Families is designed to care for children with autism. In 2007 Dr. Mumper founded The Rimland Center in Virginia, to mentor clinicians and conduct clinical research.

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

There's still time to plan your trip to Dallas, Texas for the inaugural Autism Education Summit.  There are two medical tracks; one for parents who are new to treatment, the other for parents with experience under their belts.

 Join friends old and new at The beautiful Fairmount hotel in the heart of downtown Dallas  - share your experience and take home medical expertise for your loved one on the spectrum.

Registration is only $79 and includes:

• Access To All Summit Lectures

• Complimentary Coffee and Tea Throughout the Event

• Gift Bag with Products, Conference Program Guide and Vendor Coupons

• Admission to the Friday Night Welcome Party and the Saturday Night Spectacular Event! Includes one alcoholic drink per event.

Regular Registration - July 1 - October 16, 2014 $79 for one person, $139 for two people

Onsite Registration - This rate begins on October 17, 2014. $99 for one person, $199 for two people

The Summit is created by parents (that's the "experience") and physicians you've known and trusted for years (that's the medical expertise.)    You'll recognize the companies who are helping to bring you this event too.



The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

Congrats to Michael Bailey, Brooke Gorham, Real Tanner's Dad and Andrea Keller.

Contest is closed. Thank you.

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Our generous sponsor Lee Silsby is offering four free bottles of Enhansa to AofA readers.  Choose from 150 mg 150 cap bottle or Enhansa REPAIR anti-inflammatory support, 60 cap bottle.

We're blessed in the autism biomedical community to have a range of choices in conferences. Old friends gather in the Windy City each Spring, on the sunny West Coast of Florida each November and now, in Dallas, Texas beginning this October with the inaugural Autism Education Summit.  You'll see plenty of familiar faces and meet new friends and providers dedicated to helping every person on the spectrum achieve the best health and functioning.

Here's the schedule.  Here is the current list of speakers including AofA's Mark Blaxill (stay tuned for more.)

Register with a friend or partner to save. (See registration rates below) Better yet - take advantage of the special group rate savings for TEN attendees who register together. This rate is for any group of ten and includes special bonus recognition at the conference. What a great way to acknowledge a local organization, school program, town support group or even a local treatment center in your area! Email info@autismeducationsummit for more info about creating your own group.

Join the Age of Autism team at The beautiful Fairmount hotel in the heart of downtown Dallas - meet old friends, make new friends - share your experience and take home medical expertise for your loved one on the spectrum.

Registration includes:

• Access To All Summit Lectures

• Complimentary Coffee and Tea Throughout the Event

• Gift Bag with Products, Conference Program Guide and Vendor Coupons

We're blessed in the autism biomedical community to have a range of choices in conferences. Old friends gather in the Windy City each Spring, on the sunny West Coast of Florida each November and now, in Dallas, Texas beginning this October with the inaugural Autism Education Summit.

Register with a friend or partner to save. (See registration rates below) Better yet - take advantage of the special group rate savings for TEN attendees who register together. This rate is for any group of ten and includes special bonus recognition at the conference. What a great way to acknowledge a local organization, school program, town support group or even a local treatment center in your area! Email info@autismeducationsummit for more info about creating your own group.

Join the Age of Autism team at The beautiful Fairmount hotel in the heart of downtown Dallas - meet old friends, make new friends - share your experience and take home medical expertise for your loved one on the spectrum.

Registration includes:

• Access To All Summit Lectures

• Complimentary Coffee and Tea Throughout the Event

• Gift Bag with Products, Conference Program Guide and Vendor Coupons

In Austin, Texas live. View the live feed here: http://m.ustream.tv/theautismtrustusa

This is the Gut Issues panel.

By Brooke Potthast

It has been almost one year since our son James had the opportunity to use the RPM method of communication with Soma Mukhopadhyay.  James is verbal but not conversational, and his speech is best described as being very “unreliable” as well as hard to understand. James has gone from almost no real communication to total communication in 6 months.

Needless to say it has changed everything for him and for us. I tell people it is bigger than marriage, childbirth or winning the lottery. It seems as though every day we learn something really big about James and his heart and mind.

When I first realized that a lot of what we thought about James was wrong, I called Dan Olmsted. Over coffee I told him, “I think mercury toxicity creates silent geniuses.” I’ve always been certain that thimerosal and my dental amalgams caused James’ regressive autism and I am now fairly certain that a huge percentage of children or young adults with autism are not intellectually disabled, not even learning disabled, but so severely sensory-motor disabled they can’t show us.

We thought James, who is 14, was around 2nd grade in his academic understanding and that was spotty. When we decided to homeschool and let him use the letter board fo spelling answers, he was able to do 9th grade work in just a few months. We thought he couldn’t add and he easily does algebra and recently asked to learn about cube roots.  I am not writing this out of pride for our son. I am telling you this because I don’t think he is the exception, I think he is the rule. In the last year I have seen this over and over again in teens and children who are in life skills classes and who educators and doctors have said are cognitively disabled. When given the opportunity to use RPM or something like it they show us that they have not just been taking it all in, but assimilating it in a typical and functional manner. One day early on our homeschool teachers gave James a vocabulary test. They gave the word “gullible” he spelled “easily fooled." Those examples are endless.

But the most remarkable thing we have learned about James and what I wanted to share in this piece is that despite having suffered in ways unimaginable he (and I think so many of his peers) has great hope for the world and for forgiveness and understanding. It is hard to even put into words what life would be like trapped in your body. Thinking and understanding just like everyone else but not being able to join in a conversation, tell a joke, verbally express love or anger or sadness. To not have friends, have education be limited; the list is long and painful.

But here is a “legend” written by James this week. When I read it my first thought was to put it on Age of Autism because I thought it summarized so much of what this community experiences and it gives us some hope. James said in another conversation that he remains hopeful and I’d like to think we all can. The background is that he is doing Medieval literature in school right now and they have read Beowulf, Sword in the Stone, etc. After discussing (on the letter board) the Sword in the Stone he was given this assignment: (his writing is in Caps)

Why was it so hard for people to believe that Arthur pulled the sword from the stone?

BECAUSE PEOPLE CANNOT BELIEVE THINGS THAT THEY DONT UNDERSTAND.

Wednesday 10/23, 2:00pm  Eastern.

Ask the Clinician - with Nancy O'Hara, MD Register HERE.

Please note: Because this is live Q&A and not a presentation in lecture format, certificates of participation will not be offered for this event.

Have questions you'd like to ask a physician? Struggling to navigate evidence-based treatment for yourself or your loved one on the autism spectrum? Here's your chance to pose questions for free in real time.

Dr. Nancy O'Hara is a board certified Pediatrician. Until January 2010, she was the Assistant Medical Director for Defeat Autism Now!® Physican Training and the Physican Mentoring Director for Defeat Autism Now!® in Europe. Prior to her medical career, Dr. O'Hara taught children with autism. She graduated with highest honors from Bryn Mawr College and as a member of the Alpha Omega Alpha Honor Society from the University of Pennsylvania School Of Medicine. She earned a Master's degree in Public Health from the University of Pittsburgh. After residency, chief residency and general pediatric fellowship at the University of Pittsburgh, Dr. O' Hara was in private practice for 7 years. Dr. O'Hara has worked with Dr. Sidney Baker and other practitioners in the research and care of children with Autistic Spectrum Disorder for many years. Since 1999 she has dedicated her practice to the integrative and holistic care of children with neurodevelopmental disorders and Autistic Spectrum Disorder.

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

We have three bottles of new "Taste-free" Enhansa to give to three lucky readers. Leave a comment and include your email address in the email line so we can contact you if you win. Thank you to Lee Silsby for always seeking new ways to ensure nutrional support for our families.

The same original Enhansa in a water-dispersible powder form that is nearly taste-free.

By Sima Ash, CHom, CEASE Certified Practitioner, C.N.C.

CEASE therapy was developed by Dutch physician Tinus Smits who was looking for a way to help children with autism. CEASE stands for Complete Elimination Autism Spectrum Expression and Dr. Smits helped well over 300 children with Autism prior to his death in 2010. While his method was originally designed for children with autism, Dr. Smits and those that he trained have experienced success treating a number of conditions including MS, Chronic Fatigue, allergies, ear infections, hyperactivity, and detoxificat

CEASE utilizes several holistic elements to form a systematic approach that helps people detox from physical and energetic blockages while bringing balance to the mind and body.  The elements used in CEASE are:

Homeopathy – the use of remedies in different potencies.  The remedies are produced by dilution and succession and are labeled according to their potency.  Dr. Samuel Hahnemann, the founder of homeopathy noted that if a certain potency had an impact, but had not yet finished healing the problem, often times a higher potency was needed to continue the healing process. 

Isotherapy – the use of pathogenic substances that have been prepared in homeopathic potencies.  For instance if a particular medication such as Prednisone is suspected to play a part in an illness, the homeopathic version of Prednisone will be used to help the body rid itself of the physical and energetic imprints that it has left on the body. 

We recently reported on a drug trial that had been discontinued do to lack of funding when Roche Pharmaceuticals terminated its agreement with Seaside Therapeutics.  The STX209 families who were in the trial published an open letter to the CEO of Roche and received a response via Twitter.   The trial was for a drug known as STX209/Arbaclofen. The study was to include both Fragile X Syndrome and autism.  We realize that Fragile X is a very different diagnosis from autism in that it is testable and confirmable. There is some overlap in presentation and there were autism families in the study. While we tend to be leery of pharmaceutical options, for those families for whom this drug was improving their children's lives in the short term - we hope they find a way to continue the study.

Here is an excerpt of the letter:

An Open Letter Regarding STX209 to Dr. Severin Schwan, Roche Pharmaceuticals

Dr. Severin Schwan
Chief Executive Officer
Roche Pharmaceuticals
F. Hoffmann-La Roche AG
Konzern-Hauptsitz
Grenzacherstrasse 124
CH-4070 Basel
Schweiz

June 10, 2013

Dear Dr. Schwan:

Behind every drug Roche Pharmaceuticals makes are the personal stories of patients and their families. You must hear these stories everyday, and we cannot imagine the pressures you face determining where to put your resources and whose lives – whose children’s lives – you will try to save. We understand you cannot support every drug and every trial, but you are a father, so surely you will understand our desperation and need to reach out to you directly to help our children. Like most parents, we are certain you would go to any lengths – contact any person – if your children needed help; so you’ll understand why we are writing you this letter.

Recently, Roche Pharmaceuticals was involved with a Cambridge, Massachusetts-based pharmaceutical company called Seaside Therapeutics, Inc., which has been developing a drug called STX209 (Arbaclofen).  This compound has been in Phase III trials for children with fragile X syndrome.

When Roche pulled back on its R&D, it ended its involvement and financial support for STX209. We understand there have been issues with the therapy’s trial results, but it had statistically relevant improvements to secondary outcome measures. Luca Santarelli, head of neuroscience research at Roche has been quoted as saying “We concluded that arbaclofen wasn’t going to provide that real difference for patients.” Dr. Schwan, we respectfully disagree, the improvements we have seen in our children have changed the lives of our families.

Managing Editor's Note: The drug in question called arbaclofen, was in clinical trials for both Fragile X and autism. To learn more and to read about family stories, please visit stx209.com and read A Plea for Help: Fragile X Stories.

By Melissa Welin

Most pharmaceuticals represent years of research, millions of dollars of investment, and the tacit promise made by the government that what is in the bottle is safe and effective.

Most pharmaceuticals also represent the personal stories of patients and their families; stories that are often filled with suffering, struggle, but most importantly hope.

Of course, we understand the responsibility of the FDA to protect the public.

Of course, we understand that pharmaceutical companies are responsible to shareholders and have a complex formula to determine how they allocate resources. 

But sometimes, amidst shareholder meetings, bottom lines and risk aversion, our personal stories are lost.  Sometimes, we have to remind those who control access to promising treatments that there are lives at stake… that balanced against their ledger is our precious, fragile hope. 

Recently, Roche Pharmaceuticals was involved with a Cambridge, Massachusetts-based company called Seaside Therapeutics, Inc., which has been developing a drug called STX209 (arbaclofen).  This compound has been in Phase III trials for children with fragile X syndrome (the most common known single gene cause of autism) and Phase II trials for children with ASD (which has had positive results). 

When Roche pulled back on R&D investment, it ended its involvement and financial support for STX209.  Without Roche’s backing, Seaside Therapeutics was forced to issue the following statement on May 15, 2013 to the clinics involved in the administration of arbaclofen:

We regret to inform you that Study 209FX303 [An Open-Label Extension Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of STX209 (Arbaclofen) in Subjects with Fragile X Syndrome] is being terminated immediately.  The closure of the study is due to resource limitations at Seaside Therapeutics, Inc., and is not related to any known safety issues in patients dosed with STX209.

As of June 7, 2013, Phase III trial participants will no longer have access to STX209.  The abrupt end of the study will leave our children in danger of significant regression. 

For many of us in the study, arbaclofen has been that miracle for which we had hardly dared hope.  A child, who had never wanted to be touched, opened his arms for a hug.  For the first time, a five-year-old said, “Mommy”; a ten-year-old said, “I love you.”  Children were making friends, learning to read and write.  We started to believe in the possibility of a “normal” normal.

We've finally left April and its namby pamby feel good (not that we don't like feel good stories at AofA) blue lit "awareness" behind. It's fitting that May first was MAY DAY - the call of distress. Here's a story from Generation Rescue, our sponsor, and provider of the Rescue Family Grant. This grant program puts dollars into familes' hands and medical treatment.  And it is quietly changing lives for the better. Thank you to Jenny McCarthy, Candace MacDonald and the entire GR team.   You can meet Jenny and bask in the GenRescue Lounge at the Autism One Generation Rescue conference in Chicago later this month.  The cost is just $50 for a five day conference if you register by May 6.

Listen to what a Mom said about what the grant has done for her son:

Less than a month into starting biomedical treatment, the Generation Rescue grant recipients are making amazing progress!

"P's teachers were thrilled today when I came to pick him up from school. They said it was the best day he's had in a long time. P's expressive and receptive language is just taking off. He is able to express anything he wants. We're over the moon! Seeing these positive changes makes us so grateful for this opportunity."

-V, Mom to P

To find out more about the Generation Rescue Family Grant program and to apply to start treatment, please visit Gen Rescue.

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

Our friends at OurKidsASD have a contest for you. No Luck of the Irish needed, just leave a comment to enter and you can choose from one bottle of Enhansa Curcumin 150mg, 600mg or powder or ASD Vitamin and Mineral Powder any version.

OurKidsASD is the in-house brand from our sponsor Lee Silsby Compounding Pharmacy in Cleveland, Ohio. Lee Silsby is one of the largest and most respected compounding pharmacies in the country.

Our pharmacy offers a:

• Class 100 certified clean room for preparing sterile products
• Dedicated capsule room
• Large compounding facility
• Pharmacists always available to speak with practitioners and patients

We use only the finest quality chemicals and equipment to prepare our patients’ compounded medications and nutritional supplements. Customizing medication and nutritional supplements for our customers allows them to achieve their unique health goals.

Aw come on, who hasn't sung that childhood tune? Seems even Mainstream Medicine is giving a serious look to a treatment posed at Autism One several years ago - and has a study to review the efficacy of parasite treatment for autism. Yes, creepy crawlies. 

Fox News has a report that Dr. Eric Hollander, at Albert Einstein College of Medicine is conducting a study using TSO, "whipworms" for autism.  Honestly, the report looks like we could have written it right here at Age of Autism. It's encouraging to see mainstream docs looking beyond psych medications as treatment. The article has a link to volunteer for the study.

“There’s some evidence with autism that some individuals may have had an activation of the maternal immune system – the inflammatory response is activated during pregnancy,” Hollander told FoxNews.com. “The TSO is a naturally-occurring drug delivering device that can dampen the inflammatory response and decrease pro-inflammatory cytokines, which is something that keeps the inflammatory process going. And, that’s associated with certain symptoms we see in the autism disorder.”

Hollander said his patient failed to respond to typical treatments like Risperdal or Abilify, which is marketed for severe disruptive behaviors. Incidentally, the teenage patient also has a history of allergies and food allergies – and his family has a history of autoimmune diseases.

The family noticed their son’s autism behavior improved when he was having an allergic reaction or fever, leading them to believe there was a problem with his immune response – so they got the idea to treat him with TSO, an immunotherapy biologic agent.

Read more: http://www.foxnews.com/health/2013/01/21/study-looks-at-worm-therapy-to-treat-autism/?test=latestnews#ixzz2Inmlgcjz


The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

The Fall 2012 ARI Conference is set for October 11-14th at the Hyatt Regency Orange County near Disneyland in Garden Grove, CA. The Autism Research Institute has negotiated a block of special discounted room rates of just $119 per night. You must reserve your room by next Monday to take advantage of this special rate.

REGISTER HERE

Don't Miss Our Free Special Event with Ken Cook October 12th Hear Environmental Working Group President Ken Cook's 10 Americans presentation in person at the Hyatt Regency Orange County at 7:30 p.m. Friday, Oct. 12th.

Enter to Win an iPad and See "Stories in a Snapshot" at ARI's Networking Party Sat., Oct. 13th  

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

 Congrats Trina and Carly, our winners. Contest is Closed.

Our good friends from Lee Silsby Compounding Pharmacy and OurKidsASD are offering you a chance to try two popular and useful products for back to school for free in this latest contest.

Trina and Carly won a bottle of Kensho Nutritional Support (powder) for the hyperactive child and a jar of  GabaMag cream with NO formaldehyde releasing preservatives. 

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

Mapping the way forward, with Dr. Dan Rossignol and Shannon Kenitz

On the VoiceAmerica Health & Wellness Channel
AutismOne: A Conversation of Hope<
Tuesday, August 7, 12 noon Eastern/9 am Pacific
Listen HERE

MAPS:  Mapping the way forward, with Dr. Dan Rossignol and Shannon Kenitz

The Medical Academy of Pediatric Special Needs (MAPS) has been developing an ASD Fellowship for physicians and other medical professionals. Under the guidance of Daniel Rossignol, MD, FAAFP, and David Berger, MD, FAAP, this evidence-based course of study has been uniquely designed by clinicians for clinicians. The MAPS Spectrum Standard of Care Conference is coming up September 27-29 in Orlando, FL, with CME units available.  Dr. Dan Rossignol, MAPS president and head of the Rossignol Medical Center, and Shannon Kenitz, executive director of the International Hyperbarics Association (IHA), join Teri to talk about MAPS and the road forward for kids on the autism spectrum.  Visit www.medmaps.org.

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

We have contests frequently at Age of Autism. But this one is special. Dr. Martha Herbert, MD, who is an assistant professor of neurology at Harvard Medical School and a pediatric neurologist at Massachusetts General Hospital has kindly given us a signed copy of her book The Autism Revolution Whole Body Strategies For Making Life all it Can Be. Please leave a comment to enter.

After years of treating patients and analyzing scientific data, prominent Harvard Medical School researcher and clinician Dr. Martha Herbert offers a revolutionary new view of autism. Autism is not hardwired into a child’s genes and destined to remain fixed forever, as parents are often told. Instead, Dr. Herbert approaches autism as a collection of challenges, many of which can be tackled in a deliberate and methodical way. Her recommendations aim to provide optimal nutrition, reduce toxic exposures, shore up the immune system, reduce stress, and open the door to learning and creativity—all by understanding and truly meeting your child’s needs.

Drawing from the newest research, technologies, and insights, as well as inspiring case studies of both children and adults, Dr. Herbert guides you through small changes that can create a substantial difference in your loved one with autism. A paradigm-changing book that offers hope and healing for the millions of people with autism in their lives, The Autism Revolution shows that there’s plenty you can do every day to reduce vulnerability, feel better and live life to its fullest.

Read the Table of Contents and Introduction.

Read Preventing and Dealing with Autism Problem Behaviors.

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

**FREE EVENT** Save the date!

Don’t miss this special two-day event where you can hear the latest on Autism research and treatments from one of the top ASD specialists in the country! Come with questions and hear Dr. Frye speak on…

Location:
Saint Alban’s Episcopal Church
3625 Chapel Road
Newtown Square, PA 19073Dr. Richard Frye is coming to TACA PA!!
www.tacanow.org

Friday, August 3, 2012, 7:00 - 9:00 PM

• Neurological Abnormalities in ASD

Children with autism have been found to have many neurological abnormalities. These include differences in brain function, structure and connectivity, neurotransmitter and metabolic abnormalities and electrical disturbances in the brain including seizures. This talk will review some of the important aspects of these neurological abnormalities and their treatments.

Saturday, August 4, 2012, 10:00 AM - 12:00 PM

One Talk Covering Two Common Issues

• Mitochondrial Disorders in Autism

There is strong evidence that many children with autism also have a mitochondrial disorder, which means that the mitochondria produce less fuel for the body and for the brain. This talk will discuss the challenges of how to test for mitochondrial disorders, as well as the current treatments available for them.

• Seizures in Autism

A New National Survey on Treatments: Approximately 25% of children and adults with autism have seizures, and another 50% have sub-clinical seizures that are often undetected but may affect their intellectual functioning. This presentation will briefly review seizure issues in autism, and then present the new results of a national survey of over 500 children and adults with seizures, with a comparison of the benefits and possible side effects of many medical, dietary, and nutritional treatments.

Dr. Richard Frye, M.D., Ph.D., who is the Director of Autism Research and Associate Professor of Pediatrics at The University of Arkansas for Medical Sciences, speaks across the country on pediatric neurological disorders. He specializes in pediatric neurology disorders including learning disabilities and dyslexia, autism and developmental delay, speech and language delay, attention deficit, tics and Tourette’s syndrome, sleep disorders, and epileptic encephalopathy. Dr. Frye is board certified in Pediatrics and in Neurology and completed fellowships in behavioral neurology and psychology.
Nationally Renowned Speaker from Autism One, ARI & more!

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

We're fortunate to have conferences year round from organizations seeking to provide the best in treatment, education, living, employment and other pressing topics in autism. Traveling isn't always easy for us though - goodness knows.  This year, the Spring 2012 ARI conference is in Newark, NJ at Liberty International Airport. That means you can hop onto AMTRAK from almost anywhere on the Eastern seaboard and chug chug right to the conference. No airlines, no taxis, no hassle.

Register HERE

From ARI:

We've brought back our popular "Buddy Pass" rates exclusively online. Pre-register a group of two or more online to attend a General, Science or Diet Session, then add as many friends as you want for the sessions they want, and you'll all save 25% on your registration.

Note: 25% Discount does not apply to practitioner seminars, fees for continuing education credits, printed books or special events. Discount is automatically applied at checkout when you register online.

FRIDAY GENERAL SESSION - APRIL 27TH
7:30-8:15
       
Registration, Exhibit Viewing, Hosted Coffee, Cash Breakfast
8:15-8:30
       
Welcome Announcements
SPEAKER  Stephen Edelson, Ph.D.
8:30-9:30
       
The Time Is Now
SPEAKER  Andrew Levinson, MD
9:40-10:30

YOU WON'T WANT TO MISS THIS -- IN PERSON -- AT THE AUTISMONE/GENERATION RESCUE 2012 CONFERENCE ON FRIDAY, MAY 25, 11:30 AM

The Westin Yorktown Lombard, IL (outside Chicago)

Go to Autism One Generation Rescue Conference to register ($25 processing fee, conference is free.)

AUTISM: The Microbial Track    
Presented by Nobel Laureate Luc Montagnier, M.D., and the group CHRONIMED

Health authorities in many countries are concerned - and rightly so - of the significant growth in the number of children with a specific neuropsychiatric syndrome, autism. The most recent CDC US statistics give an estimate of 1 child in 88 affected by an autism-related syndrome. The sociopsychological aspects of this complex syndrome should be treated as such, but we researchers and doctors believe it necessary to go further by looking for organic causes and from this, derive a policy of both treatment and prevention. The observed increase may come from genetic factors -- real factors to be sure -- but factors that have not changed in the various populations affected in less than a generation. On the other hand, we must consider environmental factors as they have changed considerably our biosphere: infant nutrition, air pollution and pesticides, increased exposure to electromagnetic radiation of all frequencies associated with the globalization of human communication, and changes in our microbial flora.

  CONTEST IS CLOSED. We'll have another soon from our good friends at Lee Silsby Compounding Pharmacy and OurKidsASD.

Congrats to RONDA and MANDY who've each won a bottle Enhansa (150mg/150 capsules or 30gm powder) and a bottle of ASD vitamin and mineral powder (30 scoops, any variety).

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

  Our good friends from Lee Silsby Compounding Pharmacy and OurKidsASD are offering you a chance to try two popular and useful products free in this latest contest.

Leave a comment to win a bottle Enhansa (150mg/150 capsules or 30gm powder) and a bottle of ASD vitamin and mineral powder (30 scoops, any variety). We'll have 2 winners.

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

Dr. Jerry Kartzinel will speak regularly on topics related to the care and management of autism for parents of children with autism.  You're invited by  Dr. Jerry to email mendingautism@gmail.com to sign up for this Wednesday night's (March 14, 2012) webinar on Managing The Stress of Autism which runs at 9PM Eastern, 6pm Pacific.

Dr Jerry Kartzinel is a Fellow in the American Academy of Pediatrics. He specializes in the recovery of neurodevelopmental, chronic neuro-inflammatory diseases, and hormonal dysfunctions. After receiving his medical degree at St Louis University School of Medicine, he completed his residency in pediatric medicine in the Air Force. Following Desert Storm, Dr Kartzinel practiced general pediatrics in private practice for 10 years until his fourth boy was diagnosed with Autism. A nationally recognized speaker and New York Times Best Selling Author, Dr. Kartzinel has presented medical interventions that work to improve the lives of his patients who suffer from many types of medical conditions that include: autism, allergies, inflammatory bowel disease, chronic constipation, chronic diarrhea, sleep cycle disruptions, and hormonal imbalances. He regularly teaches Continuing Medical Educations courses on children’s health issues to physicians and other health professionals. His clinical approach is to treat the whole patient by carefully obtaining a full and complete history and based on this history, obtaining very detailed laboratory evaluations. Individualized plans are implemented integrating the very latest medical interventions that include both traditional and complimentary medicine approaches.

Thank you to Christina Adams and Autism File Magazine for allowing us to share this article on Camel Milk and autism with  you.  Published bi-monthly, Autism File is available nationwide at Barnes & Noble, Books A Million, and several other retail outlets, and by subscription.  For more information, visit www.autismfile.com .

Mother/Author’s Six-Year Camel Milk Quest Revealed

New Article Reports Significant Results for Autism, Diabetes and Machado-Joseph Treatment

Los Angeles, CA -- In an article published today, author Christina Adams reveals for the first time her secret six-year struggle to import raw camel milk from Israel to treat her son who was diagnosed with autism at the age of two.  Reporting that treatment with camel milk greatly improved her son’s autism symptoms, Ms. Adams, featured Autism File contributor and author of A Real Boy: A True Story of Autism, Early Intervention and Recovery (Berkley/Penguin), also points out scientifically documented information showing treatment potential for a range of diseases and conditions including diabetes, hepatitis, and food allergies. The article, appearing in the April/May issue of the Autism File magazine, breaks the news that camel milk is reportedly reversing symptoms in some patients with Machado-Joseph disease--a fatal inherited disorder with no previously known treatments.

In the article, Ms. Adams, a former NPR Day to Day commentator, explains the science behind the use of camel milk for treatment of various diseases.  She also shares her personal story of being a newly single mom who reached across the world via Skype and telephone to form a bond with two Israelis, one an esteemed Israeli-American scientist, the other a camel milk producer.  According to Ms. Adams, “They sent milk for my son, who showed remarkably better speech, attention and emotional connection the morning after drinking a half-cup of milk at bedtime.”  Adams also contacted California camel farmer Gil Riegler of Oasis Camel Dairy, as seen on “Dirty Jobs,” “Larry King Live” and “Bizarre Foods” (upcoming), who brought her frozen bottles of milk in suitcases from Israel after she introduced him to her Israeli contacts—one of whom turned out to live next door to Gil’s brother.

Ms. Adams will give the first known US public lectures on camel milk’s healing properties in May at Oasis’s first “camel dairy” seminar in California and at the Autism One conference in Chicago, in her new “Practical Magic” lecture series.  She is the first known person to get federal government permission to import camel milk for autism.  “My son has been drinking camel milk for the last five years, making him probably the longest continual user of camel milk for autism treatment,” said Ms. Adams.

You can read the full article at Got Camel Milk? Anecdotal Evidence Suggests It May Improve Autism Symptoms But Getting it From the Desert to Your Door Isn't Easy. Excerpt below:

Nomads in Algeria have long said, “Water is the soul, milk is the life.” They may be proved right
by emerging reports that camel milk, the drink of nomadic peoples from Mongolia to India, may have a healing effect on various diseases.

By Teri Arranga

An important movement has been initiated that holds great promise for the future of autism prevention and recovery. The Medical Academy of Pediatric Special Needs (MAPS) has as its mission to “provide education and long-term support for practitioners, ensuring the quality and consistency of medical care for children with autism and related chronic conditions.”

Although much of the focus will be on autism, MAPS will deal with all things pediatric, including allergies, asthma, attention-deficit/hyperactivity disorder, immune dysfunction, and more.

Prolific author, researcher, and clinician Daniel A. Rossignol, MD, FAAFP, serves as president, and holistic, board certified pediatrician David Berger, MD, FAAP, serves as vice president. I interviewed Dr.

Berger, who has a superb track record of preventing autism and other chronic illnesses in his pediatric population, and I was excited and encouraged by what he told me of MAPS.

I first asked Dr. Berger why there was a need for MAPS. Dr. Berger began by telling me why MAPS is unique, exemplifying the need: “This is a program developed by physicians, organized by physicians, and taught by physicians for physicians. Clinicians will need to go through a series of requirements before obtaining the level of Fellowship.”

The MAPS curriculum will center on conferences that consist of two levels of training. MAPS will offer several levels of affiliation. Anyone who works with individuals on the autism spectrum can be a member of MAPS and attend MAPS conferences; however, only prescribing practitioners who can implement pharmacological strategies can move to the Candidate and then the Fellow levels of MAPS. The reason for this is that individuals with an autism diagnosis often have underlying conditions—what some people call “comorbid”—that may benefit greatly from some prescription medications.

Use your Hanukkah gelt or stocking stuffer cash for a trip that's sure to make Chicago "your kind of town." Autism One is a whirlwind of friendship, support, knowledge, partying (what, you think we're all business?) and energizes attendees to seek answers for loved ones throughout the year.

• 100+ SPEAKERS/PRESENTATIONS
• 20+ TRACKS
• 5 DAYS
• 3 KEYNOTES
• 5 FEATURED

How did you know that your child could be helped? Someone told you the truth. After a decade of AutismOne's service to you, your child, and your family, that is what the AutismOne/Generation Rescue 2012 Conference continues to do -- present you with the truth . . . the truth that leads to treatment. It's the dawn of a new decade for AutismOne. It's the dawn of a new era for your child.

This year's proceedings include Nobel Laureate in Physiology or Medicine Dr. Luc Montagnier, best-selling author David Lender, and a major announcement we hope to make later this week. The conference registration fee has again been waived. There is a minimal processing/materials fee of $25, and those registering through February 15, 2012, will receive a coupon for three free digital lecture downloads from the 2011 video selection. There will be affordable childcare spots available to conference registrants on a first come, first served basis.

AutismOne is also pleased to announce the opportunity for you to make tax-deductible, year-end donations through our new donation button starting December 26, 2011. Please help us continue to help children and families far and wide through the many educational and advocacy initiatives of AutismOne, including the conference, Autism Science Digest, AutismOne Radio, and much more. Many thanks for your kind support. www.autismone.org.

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

If you've met Dr. Amy at Autism One, you know she packs the house for her sessions.  Putting families first, she also offers free consultation and support online.  Since 2003, Dr. Amy, the mother of three, has worked with thousands of families of children with autism. She has earned a doctorate in molecular biology and immunology, and certifications in Alternative Medical and Holistic Health practice.  Visit DrAmyYasko.com to learn more about her practice.

Join Dr. Amy Yasko in the beautiful mountains of Maine for a Question & Answer session with Erin Griffin, SuperMom and moderator of our www.CH3nutrigenomics.com chat group. Watch via videochat as she answers your questions, handpicked by Erin from the Discussion Group forum.

All Q&A sessions will be archived and available for additional viewing after the premiere at www.DrAmyYasko.com/Resources/QandA

Answers will also be provided in written format and posted on the www.CH3nutrigenomics.com chat group for additional reference.

Please note that the Q&A Session will not replace Dr. Amy's Webisode Series every other Sunday at 8PM EST, but is an additional resource we provide towards your Pathway to Recovery.

We hope that you enjoy this new feature from Holistic Health International

The next airtime will be this Sunday, Dec. 18th at 2pm EST and will continue there after on the 1st Sunday of every month at 2PM EST.

Dr. Amy comments on questions posed by families using the Yasko Protocol in the Online Discussion Group.
Learn more about Dr. Amy.

The Nutrigenomic Test used in our program is based on Dr. Amy’s extensive research, and clinical experience—working with both children with autism, and adults with neurological ailments.

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.