SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

The Autism Calendar, November 2002 Update is out!

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Tuesday, November 12, 2002 Promote Your Event - Free! - Send a

CALENDAR LISTING:

MEDIA

* Do Vaccines Cause Autism?: Time Magazine

* NPR Coverage Of The MMR And Thimerosal Recent Articles

AWARENESS

* Few Options for Treating Autism: NY Times Editorial

ADVOCACY

* Ombudsman to Probe Wait For Autism Treatment In Ontario

RESEARCH

* Researchers Make Stem Cell Breakthrough

* Understanding the Biology of Autism and Related Disorders

CARE

* CAN Announces The Availability of TalkAutism™

LETTERS

* About the 5 Year Old Killed: Am I Missing Something?

* CAN's Position "Shocking and Disappointing"

* You Can Rule out Mercury

* Watched The Whole Proceedings In Tears

* Readers Posts

MEDIA

Do Vaccines Cause Autism?: Time Magazine

Many parents believe they do. But a large Danish study, the most rigorous so far, found no link

Any rite of passage that involves jabbing needles into small children is bound to worry more than a few parents. But that doesn't begin to explain why so many moms and dads are convinced — despite mounting scientific evidence to the contrary — that the triple vaccine against measles, mumps and rubella (MMR) causes autism in some youngsters. The latest study exonerating the MMR vaccine comes from Denmark, where investigators looked at the health records of every child born from 1991 through '98, more than 537,000 children. No matter how researchers analyzed the data, there was no difference in the autism rates of children who received the MMR vaccine and those who did not.

The Danish findings, which were published in the New England Journal of Medicine last week, are persuasive for several reasons. Denmark's socialized medical system has generated one of the most complete health records of any country. So the investigators were able to document accurately both sides of the equation: those who were (or were not) vaccinated and those who developed autism. Even when other factors, such as age at vaccination, were taken into account, there was no difference in autism rates between vaccinated and unvaccinated children. There was no clustering of autism diagnoses in the weeks and months after vaccination. There was no difference in the number of diagnoses of other developmental disorders related to autism in the vaccinated and unvaccinated groups.

Other epidemiological studies over the past four years have come to similar conclusions, but none has been so large and so complete as the Danish study. Indeed, the accumulated evidence is strong enough to convince even onetime proponents of the MMR-autism link, like Dr. Jeff Bradstreet, director of the International Child Development Resource Center in Palm Bay, Fla. "MMR does not appear to cause autism," Bradstreet concedes. "If it did, it would be a godsend because we could change the vaccine and that would be it." Still, he suspects that the MMR vaccine might worsen a pre-existing autistic condition.

The evidence for even that tenuous link is hotly debated. "If MMR made autism worse, then we would expect to see different rates [between vaccinated and unvaccinated children] in cases of both autism and related disorders," says Dr. Kreesten Madsen, the epidemiologist who led the Danish study. But that difference did not show up.

More and more, it seems as though the focus on the MMR vaccine has been a colossal distraction in autism research — and in parental concern. Just as a few eyewitness reports made in good faith led police to focus on a white van in the search for the Beltway snipers and overlook the blue Caprice, the controversy over MMR may have prompted parents of autistic children to focus too intently on vaccination. The latest research suggests that the disorder begins in the womb — long before any vaccines are given. There is also intriguing evidence of abnormalities in the immune system. But there is no evidence that the MMR vaccine causes autism.

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NPR Coverage Of The MMR And Thimerosal Recent Articles

[This comes in thanks to Vicky Debold.]

National Public Radio stories on the NEJM article and the NYT article. The story from today interviews Neil Halsey and Paul Offit. A comment was made that people who question the safety of vaccines should be required to conduct studies that prove vaccines aren’t safe. The comment made by the editor of the NEJM regarding the MMR story is revealing.

Nov. 6, 2002

A new study provides the most conclusive evidence yet that the Measles/Mumps/Rubella vaccine does not cause autism. Scientists in the United Kingdom and some parents have suggested that the MMR vaccine causes autism in some young children who seemed to be developing normally until the time they got the shot. To examine whether there's a link, researchers in Denmark used the national registry of all Danish citizens to track the entire population of children over an eight year period. The same MMR vaccine was used in the U.S. and in Denmark. The researchers concluded there's no association between the MMR vaccine and autism. NPR's Vicky Que reports. (4:00)

Nov. 11, 2002

A New York Times Magazine article says a prominent vaccine researcher became concerned about the safety of some childhood inoculations. But the researcher says his views on a link with autism have been misrepresented. NPR's Jon Hamilton reports.

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AWARENESS

Few Options for Treating Autism: NY Times Editorial

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Recent news of a steep rise in childhood autism cases in California came as no surprise to parents of children who struggle with the disorder. In the eight years since my husband and I enrolled our son, now 11 years old, in a private school for children with autistic-spectrum disorders, we have seen the number of students triple — mirroring the three-fold increase, over about a decade, in autism cases reported in California.

Scientists now agree that aspects of the disabling syndrome occur in one of 500 births. And yet this scary statistic has spurred no large-scale, national response. For most parents, finding effective treatment remains a do-it-yourself project. A daunting one, to be sure. Here in Texas, government-sponsored programs for children with autism and other developmental disabilities have waiting lists up to nine years long.

But autism is a window-of-opportunity disorder, which means the earlier in a child's life you intervene to adjust the faulty neural wiring that causes it, the better the outcome. So most families swallow their grief and get down to work. They devour the latest research, dose their children with nutritional supplements they read about on the Internet, and flock to autism conferences to absorb wisdom from the experts. As new, experimental treatments emerge — sometimes invasive, invariably expensive — some do-it-yourselfers try them all, even if they must empty savings accounts and assume second mortgages in the process.

According to many experts, the most effective treatment for autism in very young children is intensive education — one-on-one teaching of language and skills. The cost? An average of $33,000 a year, for one child.

By law, of course, parents of all children with disabilities can turn for help to the public schools. According to the provisions of the Federal Individuals with Disabilities Education Act, schools must identify disabled children and provide them with "free and appropriate" educations, beginning at age 3.

However, there are several catches. Courts have ruled that the law does not oblige teachers to follow so-called best practices with disabled children or to help them reach their full potential. School personnel often protest that the law requires them only to help the child make measurable progress — which can be interpreted as making eye contact with the teacher or holding a pencil correctly in seven out of 10 attempts. While some families have won court battles to gain early intervention for their children, the victories are not widespread. Across the country, less than 10 percent of children with autism receive the amount of therapy that a national panel of experts recommended last year.

But the bigger problem is that autism has not yet been accepted as a medical condition. There is no blood test for the disorder, no obvious physical marker. But despite mounting research showing that autism is a genetically based brain disorder, some health insurance providers refuse to cover such core needs of autistic children as speech and occupational therapy, on the grounds they are educational rather than medical services.

Which brings some of us back to where we started. Faced with finding a decent middle school for our son to enter next year, my husband and I have joined with parents in the same fix to start one ourselves. But some parents are too poor, or too exhausted from raising children who may have challenging behaviors, to do everything themselves. For these families better remedies are needed.

First, public schools should not be acting as emergency rooms for autistic children. While schools must play a substantive role, they need partners in the challenge of helping students with the disorder. As an initial step, federal government should reimburse schools for the additional costs of educating disabled children. Currently, Congress covers 17 percent of these expenses, rather than the 40 percent required by law. Federal policy makers are holding out for a complete overhaul of special education, charging that the current system creates nightmarish paperwork for schools.

Fortunately, Congress has taken a step toward bringing autism into the medical mainstream. As part of the Child Health Act of 2000, it authorized funding for research to study autism. This could be the start of a broad initiative to address what one California researcher called an autism epidemic.

Until the system changes, parents of autistic children will be on their own, left open to experiences like the one I had with a public school speech therapist at the start of my family's autism journey. She explained she could not help my son reach the goals the school district found appropriate for him because she was too busy. Granted, she did have a heavy caseload and other administrative duties. But if the public schools cannot meet their obligations, somebody else — the federal government, health insurers — needs to share this responsibility.

Polly Morrice writes on education and culture.

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EDUCATION

Ombudsman to Probe Wait For Autism Treatment In Ontario Hundreds of children are turning 6 before ever receiving treatment

[By Theresa Boyle in the Toronto Star.]

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The province's ombudsman is launching an investigation into long waiting lists for children in need of autism treatment.

Clare Lewis sent a letter to NDP MPP Shelley Martel (Nickel Belt), agreeing to her request for a probe into the backlog of cases of autistic children waiting for Intensive Behavioural Intervention (IBI).

"I share your concern and intend to commence an investigation of this issue on my own motion," Lewis wrote in a letter dated Sept. 6, indicating that he, too, has received complaints about the issue and is taking up the probe on his own accord.

Some 900 children between the ages of 2 and 5 are on the waiting list for behavioural intervention. The Conservative government cuts off funding for the treatment once a child turns 6 years of age.

"Hundreds of children are turning 6 before ever receiving the treatment," Martel said.

The intensive approach involves trained therapists working one on one with children, reinforcing correct behaviour, language and academic skills.

Children typically require several years of treatment, but studies show the therapy can produce significant results — nearly half of autistic children can be taught to function normally.

Most of the other half of autistic children will show some improvement.

Parents argue that the treatment should be considered medically necessary and funded through the health ministry.

Instead, it's funded by the social services ministry, which applies more restrictions, such as the age limit, in covering the costs of care.

A separate complaint about age discrimination has been filed before the Ontario Human Rights Commission.

The B.C. Supreme Court recently ruled that IBI treatment is medically necessary. For the government to deny access to treatment is a breach of an autistic child's human rights, the court ruled.

Martel said she's encouraged by Lewis' investigation.

"When the ombudsman gets involved, that can add weight to our push for fairness and can force the government to right the wrong," she said.

"Autistic children need IBI treatment to have a chance of a near normal life. Now is the time to step up the pressure."

Because autism is recognized as a medical condition, it should be funded through the Ontario Health Insurance Plan, she said.

Martel also called on the government to do more to help autistic children in the public school system. Special education services now provided in Ottawa are being threatened because of budget cuts, she said.

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RESEARCH

Researchers Make Stem Cell Breakthrough

At the University of Texas Medical Branch at Galveston (UTMB)

Galveston, Texas - For years, scientists have dreamed of using stem cells--cells that can become any cell type in the human body -- to replace neurons damaged by brain or spinal cord injury or such neurological disorders as Parkinson's disease, Alzheimer's disease or amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). But a major obstacle has always stood in the path of making such a therapy work: Whether derived from embryonic or adult tissue, only a few stem cells transform themselves into neurons when placed in most areas of the brain and spinal cord. Most simply fail to develop, or become glial support cells, not the neurons that need to be replaced.

Now, in a breakthrough with great significance for the use of stem cells in central nervous system therapies, researchers at the University of Texas Medical Branch at Galveston (UTMB) have found a way to make the majority of human fetal stem cells implanted into rat brains and spinal cords develop into neurons.

A Nature Neuroscience paper entitled "Region-specific generation of cholinergic neurons from fetal human neural stem cells grafted in adult rat" (published in the journal's December issue and appearing online November 11) describes experiments by Ping Wu, Yevgeniya Tarasenko, Yanping Gu, Li-Yen Huang, Richard Coggeshall and Yongjia Yu in which they pre-treated human fetal stem cells with a mixture of chemicals important to neuron development. When injected into the prefrontal cortex, medial septum and spinal cord of adult rats -- all "non-neurogenic" regions that normally do not produce new nerve cells -- the "primed" cells almost all differentiated into neurons. Moreover, they developed into exactly the right kind of neurons for the central nervous system area into which they were implanted.

"This priming seems to get the cells into a plastic intermediate stage, and then after they're injected they acquire environmental cues and become specific kinds of neurons according to where they're located," said Wu, an assistant professor of anatomy and neurosciences at UTMB.

Wu, who holds a doctorate in neuroendocrinology from UTMB in addition to a medical degree, has worked for two years to find a way to get fetal stem cells to develop into cholinergic motor neurons -- nerve cells that release the neurotransmitter acetylcholine and also provide the link between the central nervous system and the muscles. "As an M.D., my ultimate goal is to find a way to help patients with neurological disorders and brain and spinal cord injury, and cholinergic neurons are what degenerate in disorders like Alzheimer's and Lou Gehrig's disease, as well as being damaged in spinal and brain trauma," Wu said. "Until now, nobody's been able to get a significant number of cholinergic neurons from primarily cultured stem cells, but using this primer we can get over 55 percent such neurons with transplanted stem cells."

Funded by a new researcher grant from the Sealy & Smith Foundation and a grant from The Institute for Rehabilitation and Research (TIRR) Mission Connect project, Wu's group is continuing to investigate the possibilities for stem cell implantation -- extending the studies it has already conducted on healthy rats to those with spinal cord injury and motor neuron disease.

"We will see if we can produce the same results in those diseased animals, and then the next challenge will be to see if the neurons can actually make the right contact to the right targets -- for example, if motor neurons are transplanted into the spinal cord, whether they can send fibers, or axons, to muscle," Wu said. "Then we'll see if they can release the neurotransmitters, and then look at function to see if there is a long-term functional recovery. We also need to confirm that there is no tumor formation from the implanted stem cells. Then we're talking about real clinical significance and real clinical trials. And hopefully after we sort out those critical issues, we can think about clinical applications to treat neurodegenerative diseases and spinal and brain trauma."

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Understanding the Biology of Autism and Related Disorders: A Guide to Biomedical Interventions

Hosted by Pittsburgh Biomed, a parent support group.

Saturday January 18, 2003 Wexford, Pennsylvania

The conference will be presented by physicians and healthcare professionals treating children within the autism spectrum. Topics to be covered include: The Autism Epidemic, Integrative Medicine for Autism (DAN! Protocol), Nutrition for Developmentally Delayed Children, Vaccines and Autism, The Role of the Gut in Autism, A Secretin Update, Heavy Metal Toxicity, and the Future of Biomedical Treatments for ASD. A discussion session at the end of the conference will give participants time to ask questions to the panel. In addition, two concurrent lunch sessions are being

held: Dr. Ken Bock will address healthcare professionals interested in learning more about Biomedical Interventions for ASD and Betsy Prohaska will talk about Implementing the GF/CF diet. Seating for these is limited so sign up in advance.

Speakers include: Dr. Andrew Wakefield, Dr. Amy Holmes, Dr. Jeff Bradstreet, Dr. John Hicks, Dr. Ken Bock, Kelly Dorfman and Betsy Prohaska.

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CAN Announces The Availability of TalkAutism™

Communication resources and services available free through their website.

[From Cure Autism Now announcement.]

TalkAutism includes an interactive Resource Directory called ExpertFind™. ExpertFind allows you to search through autism’s largest ‘spontaneously updating’ resource directory that accesses all type of resources and services available for the autism community. This directory includes Autism organizations, governmental agencies, doctors & therapists, schools & summer camps, websites and products and services. If you have a favorite resource (or expert), we welcome you to add it or review or post testimonials and ratings to existing resources.

If you don’t find a resource you’re looking for, we also host a Help Wanted bulletin board, which categorizes your request in a special message board by location, and allows the autism community and advocates to provide helpful responses. We welcome anyone who can relate and respond to these inquires to support our advocacy for families.

Users can also access Virtual Speaker™, a service to connect families and professionals with autism experts covering various topics. We offer Specialty Chats, a Q&A with an expert in a virtual chat room, which is professionally moderated, and is also available as a transcript for subsequent review. In the future we will be adding a new distance-learning platform.

Lastly, our Discussion Area provides our own generic message board(s), plus access to other groups who have successful news and discussion services available.

Cure Autism Now values the importance of enhanced communication to the families and professionals it serves. We hope that you benefit from TalkAutism, “how the autism community shares knowledge, information and assistance.”

[Brief Commentary: The idea for an Expert Registry website with user testimonials, or ratings by families with autism was pitched a year and a half ago to another large autism organization in a editorial I wrote in the FEAT Newsletter; then again privately at an autism coalition meeting almost a year ago. Afraid of lawsuits, the big group ran from the idea. To CAN's credit, they implemented it within a package of other offerings as just announced. These services fill a much felt void of support resources experienced by the ever-growing number of families with newly diagnosed autism. This is a new direction for CAN whose exclusive goal had been fundraising for autism research. Also new for CAN is their stated widening interest in environmental causes research, as long as it isn't about vaccines. Still this movement deserves encouragement, so kudos for showing some new direction guts, even if it isn't quite a full CAN of guts. Leaky guts? OK, I'm done. –Lenny Schafer]

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LETTERS

About the 5 Year Old Killed: Am I Missing Something?

I am quite disturbed by this incident in which an 18-year old retarded teen was convicted of drowning a 5-year old autistic boy. As much as I am upset that even with the mental capacity of 10-year old that he might be capable of such an act, I keep scratching my head at the fact the 5-year old, who apparently could speak or feed himself was outside without scrupulous adult supervision. Unless I am missing something, I just can't for the life of me figure out what he was doing with those boys without an adult around. Shouldn't the mother bear at least 95% of the responsibility for his death?

I have an 8-year old high-functioning autistic son, and I am not going to let him wander off with anyone other than a trusted adult.

- Tonya Gary

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CAN's Position "Shocking and Disappointing"

After a thousand parents and doctors saw slides of ileal and colonic biopsies with inflammation (as verified by PCR) due to vaccine-strains of measles virus at our recent DAN! conference, it was a shocking disappointment to hear CAN's endorsement of the very flawed Danish study. An epidemiological survey in a nation that injects ethylmercury (as

thimerosal) far more prudently than in the U.S. is being used to implicitly endorse the actions (and continued denials) of the those agencies that mandated the mercury-laden Hep B vaccine to newborns from 1991 to 2001.

In my opinion this was most likely what started the gut and immune damage in many susceptible children leading to their inability to subsequently handle the MMR vaccine. To take the MMR outside of the entire vaccine picture is scientific folly.

I hope CAN executives will have an opportunity to see the MV-related data of top-notch scientists such as Wakefield, Buie, Krigsman, O'Leary, and others, and direct more of their funds to creating diagnostic and treatment clinics. I predict that the epidemic we are seeing now will start to subside in 5 or 6 years, even though we have many other environmental toxins lining up to take on mercury's job. In the meantime, we have thousands upon thousands of very sick kids that need medical help much more NOW than they need genetic studies.

- Jaquelyn McCandless, M.D., physician, grand-parent of an ASD child, and author of Children with Starving Brains.

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You Can Rule out Mercury

Dr. Rimland's comments in the SAR report:

"I was also very disappointed to see that the"

authors failed to mention that the mercury-containing

Thimerosal is not included in the pediatric vaccines

used in Denmark. That is a crucial omission . . .it

precludes their findings from being considered applicable

to the US population where the children's immune systems,

brains and gastrointestinal systems have been subjected

to many times the supposedly 'safe' level of mercury

because of mercury-laden vaccines."

I'm not sure where Dr. Rimland orders his vaccines from, but there is little or no thimersol in the current routine pediatric vaccines that my colleagues and I administer in the United States.

"The fact that the Danish study reports much lower (50%)

prevalence rate for autism in their country than the

current US figures is a likely result of their having

banned Thimerosal from their vaccines, and reinforces

the inapplicability of their findings to the US

population." – Bernard Rimland, ARI

If there is any relationship between thimersol and autism, the incidence of autism should have been dropping precipitously in the past year in the U.S. and should continue to drop even faster next year.

I for one have noted no such decline in the number of newly diagnosed autistic children in my practice since the advent of thimersol-free vaccines in the U.S.

- Gary Mirkin, MD

From the SAR editor: The Thimerosal vaccines were never recalled, but were allowed to be used up; to be replaced by vaccines Thimerosal-free, eventually. It's been a slow phase out over the last two years. I wouldn't

expect to see results so soon. -LS

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Watched The Whole Proceedings In Tears

Thank you for your commentary and the alert to the NVIC Conference on CSPAN2. I'd happened across it myself and immediately called my mother and sister, who tuned in and watched the whole proceedings in tears. My sister had a baby 1 week ago today and is panicked about what to do for her new daughter.

Thank you for including Portia Iverson's press release on the CAN position vis a vis the MMR, however misguided I believe it is. It's important for me to know what's being said and what the arguments are on both sides of this issue. I get the feeling she didn't tune into Dr. Wakefield's presentation, nor has she kept up with the growing body of research that shows vaccine-strain virus in our kids, from their guts to their cerebral-spinal fluid. My son, for example, has a measles titre 6 times the top of the reference range for immunity, with marked immune dysfunction and gastrointestinal distress. We suspect autistic enterocolitis, with cause.

I'm glad Ms. Iverson can put the MMR-autism question behind her. I can't. And I can't accept that the issue is resolved. From what I've learned, there is no single bullet that caused my son's autism, but an unfortunate cascade of events. It does no one a favor to disregard any part of that cascade. There may be a genetic predisposition that is triggered by multiple environmental events. I lean toward the hypothesis that thimerosal-laden vaccines impaired my predisposed son's immune system so that he wasn't able to appropriately assimilate the MMR and instead of developing immunity. Unfortunately for us, it got a foothold as an atypical, persistant infection.

I appreciate the comments you've inculded from Bernard Rimland pointing out that Thimerosal isn't used in Denmark's for pediatric vaccines and their rate of autism is significantly lower than that of the US. Why didn't that raise any alarms? It's not an identical population.

I may not have any movie star/TV friends like Ms. Iverson to help raise money and awareness, but I'm determined to do my part to keep this issue alive. I'll raise funds as I can to support independent research and argue with the status quo until someone else listens. Inceasingly, I don't believe there's a single key to solve this mystery. It's a puzzle, with many, complex pieces. Throwing out a piece because you don't want to see where it goes just makes it that much harder to get the whole picture.

- Jill Rege Palo Alto, CA

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Readers Posts

ope for a Son's Rise" on 11/4 had these inaccuracies: 1) Son Rise is part of a NON-profit organization, 2) The one week Start Up program is offered for $1995 3) Son Rise offers scholarships for parents to attend this course, 4) I have met Raun Kaufman and he is far more than "simply learned to live with it." He is one or the most engaging and interesting public speakers and personalities I have ever encountered. If you want information from a parent of a Son Rise child you can email me at doug0053400@yahoo.com

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Thank you to everyone that answered my posting. To reply back to some of you 1) We can't even get an appropriate placement where we live much less equipment 2) We do have some local funding which I have utilized but it is not enough 3) I believe Doug Fluties Foundation funds organizations and not individuals. Thanks again. Kathy Hudson

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I am looking for dosage info for the supplement carnosine for a ten year old. William E. Fuller bkban@succeed.net

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Autism Organizational or family fundraising - Michigan & Illinois ONLY (so

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Anyone out there using carnosine. How

much/results- wld like to try for my 8yr old child. also anyone interested in part time tutoring dutchess cty n.y. hfa child doing aba/regular grade curriculum bubblylady@juno.com thank you.

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Has anyone used the medication Aricept with their child. If so what dosage and how long to see results and what were they? johahna@hotmail.com

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We have a limited number of discounted admission tickets to the Nov 16 benefit gala at $85 eadh on a first come first served basis. If you are interested please contgact Brita ASAP by email or by phone. Also note: dress code for men is black tie or dark suit. Remember --we have Open Bar w/ French wines and vodka, gourmet buffet and an array of desserts form four of the best area bakeries--Patisserie Salzburg, Patiss. VMmmm! bridaranyi@aol.com

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