The IACC (NIH’s Interagency Autism Coordinating Committee) added the existence of co-occurring conditions associated with autism in the strategic plan for autism research back in 2011, acknowledging the need to better understand the scope and cause of these conditions, and the need for multidisciplinary heath assessments and effective treatment guidelines. But to date, far too little progress has been made. In an effort to address this urgent unmet need the IACC has invited Dr. Perrin, President of the American Academy of Pediatrics, to attend the July 9th meeting to discuss what can be done to improve health care for children with autism. This is your chance to let them know what you think!
Those in the autism community understand that many of the behaviors present in children with autism, especially those that are self-injurious, are often related to physical pain and are treatable and preventable with appropriate medical interventions. Therefore, every effort must be made to increase the medical community’s knowledge and awareness of these co-existing medical conditions.
(Note: This comment came in today - "Make that three. We had a 2 yo boy who has autism drown over the weekend
at his family's cottage (we live in Akron, OH). He got away from his
mother and went right to the river. They found him within minutes, but
it was too late.
They need help for funeral expenses, as no one is prepared for those
costs. We are helping to get the word out about the issue of wandering
and autism in our community, as well as the family's need for
assistance. Here is a link to a page they created for donations:
Director, Autism Society of Greater Akron
By Kim Stagliano
I awoke to an email on Saturday, the subject line read, "My son is missing." I paused for a moment. You know how email can be - lots of funky subjects that lead to phishing emails of all sorts. But I opened and read the email. And then I Googled the name of the child and the details that the sender had provided. My God, her son was missing.
Owen Black had wandered away from his holiday condo in Perdido Beach,
THIS is the reality of autism and all the blue
buildings and "It's just a difference" t-shirts and the
"We don't need a cure - just accept them" in the world doesn't mean jack
diddly squat. AUTISM IS AS DEADLY AS CANCER FOR MANY CHILDREN. I
woke up thinking of Owen. And now the news we all dreaded. AGAIN.
I Tweeted the sad news about Owen - and yes, I blamed his autism. Someone Tweeted back, "It wasn't the autism you moron" or something to that effect. And then she blamed "negligent parents." Really? Must have been one of the "Autism is a difference not a disability" crowd. Or perhaps a cruel skeptic - as there wasn't a scintilla of emotion for the child, for Owen.
I disagree. At all levels, from a preverbal child like Owen and Mikaela (and my own Bella) to an adult with Asperger's - autism affects day to day life in myriad ways. And yes, some are deadly. And as far as "negligent parents" go? Well, yes, I am quite sure there are rotten, negligent parents in the autism community, just as there are anywhere. The parents I have met have moved heaven and earth to keep their kids safe. I know one Mom who slept on a mattress barricading her front door in case her son tried to slip out at night. Another Mom whom I know to be a stalwart of the community, her son was found walking along a busy state route having slipped away - alive by the grace of a guardian angel. I lost my own daughter in Orlando as she quietly slipped out a hotel room door and got onto an elevator to the lobby of a 22 story property on 2200 acres while I was in the bathroom. We are not negligent - we are human. I remember being pregnant with Bella and so tired by 2pm that I had to sleep. I put on the TV and locked my bedroom door and put a bell on a chair in front of the door, knowing that Mia and Gianna would knock the bell to the ground and I'd hear it before they could leave my room. Just to get a 30 minute nap.
Editor's Note: Yesterday, Anne Dachel took apart the recent piece in the Columbia Journalism Review that trashed "balanced" coverage of the autism-vaccines link. Back in 2005, they were much more tolerant of that hoary old first amendment thingee -- "Both sides in the debate make convincing arguments to support their cases," they wrote then, and, “With science left to be done and scientists eager to do it, it seems too soon for the press to shut the door on the debate." Now, for whatever reason, that story, called "Drug Test" is not accessible on their site. So as a reader service to all you unbalanced Age of Autism types, here it is. In addition, they ran an article in 2008 (see below) that attacked their own 2005 article, and that link is still live in their site. - -- Dan Olmsted
By Daniel Schulman
On May 18, 2004, the Institute of Medicine, a branch of the prestigious National Academies, delivered its eighth and final report on vaccine safety, seeking to end a scientific controversy that had built to a slow boil over the previous five years: whether a mercury-containing vaccine preservative called thimerosal was to blame for an alarming spike in autism cases among a generation of children. After three years of reviewing this and other immunization safety questions on behalf of the Centers for Disease Control and Prevention, the institute’s fourteen-member panel rejected the thimerosal link, and, in a powerful policy statement, recommended that research funding in this area be shifted toward other, more promising lines of inquiry. Under headlines such as this one from The Washington Post, EXPERTS FIND NO VACCINE-AUTISM LINK; PANEL SAYS MORE RESEARCH ON POSSIBLE CONNECTION MAY NOT BE WORTHWHILE, the press dutifully reported the IOM’s conclusions, perhaps as eager to lay the question to rest as the IOM panel itself.
For a time it appeared the controversy over thimerosal would end there. It didn’t. Over the past seven months, it has gained traction again, leaving journalists in an awkward position. The thimerosal question — scientifically, politically, and emotionally complex — is proving to be a test for journalism, and the successes and failures are evident in the coverage.
David Kirby, a Brooklyn-based writer, jumpstarted the debate in April with the publication of his book, Evidence of Harm, which lays out a compelling case for a connection between thimerosal and autism. Then, in June, Robert Kennedy Jr. followed with a more pointed — some say over-the-top — article, co-published by Rolling Stone and Salon.com, that alleges what amounts to a government cover-up of the harmful properties of thimerosal in the interest of buffering vaccine manufacturers from a cascade of lawsuits and maintaining public confidence in the national immunization program.
Still, the bulk of the scientific establishment denies the autism link, citing the conclusions of the IOM panel, and views believers as crackpots, conspiracy theorists, or zealots — a perspective many medical experts barely conceal in conversations with reporters. In an interview with Myron Levin of the Los Angeles Times after the publication of the IOM report, Dr. Stephen Cochi, the head of the CDC’s national immunization program, dismissed supporters of the thimerosal theory as “junk scientists and charlatans.” If so, then such universities as Harvard and Columbia, among others, employ charlatans — scientists who believe that a link between mercury exposure and autism is plausible. Even so, the perception that only distraught, activist parents and disreputable scientists back the thimerosal theory has seeped into the collective consciousness of the news media, which, in general, have been reluctant to cover the controversy.
Both sides in the debate make convincing arguments to support their cases, and in the cacophony of competing claims each is guilty of using data selectively. What is known is this: Since the late 1980s the number of children diagnosed with autism has increased sixty-fold, from one in every 10,000 in 1987 to one in every 166 in 2003. Much of this spike overlaps with a period when, due to recommendations by the CDC and the Food and Drug Administration, the number of suggested immunizations on the childhood vaccination schedule more than doubled, raising the doses of mercury that some children received to levels that far surpassed federal standards for mercury exposure. (The standards were based on methylmercury, the type emitted by coal-burning power plants. Ethylmercury, which makes up nearly half of thimerosal by weight, is a closely related compound. To date, ethylmercury has received far less study, and scientists disagree on whether it’s as harmful as methylmercury, though both are considered neurotoxins.) Until the late 1990s, health officials were unaware of the total amount of mercury children were receiving in their vaccinations. It’s not unreasonable to ask how this went unnoticed, and unreported, for so long. The answer is simple: no one had ever done the arithmetic. When scientists did, the U.S. Public Health Service recommended that vaccine manufacturers phase out thimerosal from children’s vaccines in 1999 as a precaution. It was careful to note, however, that “there are no data or evidence of any harm.” As it stands, the preservative, which allowed drug manufacturers to supply vaccines in multidose vials (the thimerosal-free, single-dose versions are costlier), has been eliminated from most immunizations, excluding some flu and tetanus shots. During 1999 and 2000, the thimerosal link was quietly under study by the CDC, and, as shown in internal memos and meeting minutes, health officials were deeply concerned about what they might find.
Managing Editor's Note: This story below brings into focus the reason AofA exists. For the children (of any age) with autism and their parents, families, who live with a reality few Americans acknowledge having been fed an ever increasing diet of happy blue stories that skirt the very real hardships of autism. Often I've seen the comment, "Well you can't compare autism to (insert serious medical diagnosis here) because it's not life threatening. Really? Autism kills from the outside in. I encourage everyone to support National Autism Association's Big Red Safety Box wandering safety program. Our prayers go out to the Lynch family.
By Anne Dachel
Are we all aware now? I have no words.
Searchers found the body of a missing 9-year-old San Francisco girl in a creek near her family Lake County vacation home Wednesday, authorities said.
Mikaela Lynch, who had autism and the mental capacity of a 1-year-old, was last seen in the backyard of the home on Harbor Drive in Clearlake on Sunday around 1:30 p.m. She had been playing on a trampoline with her younger brother but was left alone briefly when he ran inside to avoid a bee, police said.
Her body was found in nearby Cache Creek by dive team members just before noon, said Clearlake Police Chief Craig Clausen. Foul play is not suspected. Clausen said it appears she wandered into the creek.
"It's really tragic," said police Sgt. Nick Bennett, adding that Mikaela was "a sweet little girl. We had hopes it might turn out differently."
Searchers had looked in the marshes near the home because Mikaela, who did not speak but could communicate through basic hand signals, was "attracted to water," police said.
By Dan Olmsted and Mark Blaxill
Scattered mumps outbreaks – possibly underreported by the CDC – are reinforcing longstanding concern that Merck’s mumps vaccine is failing far more often than it should.
The outbreaks come as Merck defends itself in federal court against a whistleblower lawsuit filed last year claiming it faked data to mask the low efficacy of the mumps component of its MMRII vaccine. Within the company, according to the suit, the effort was known as Protocol 007.
In a filing earlier this year, Merck denied wrongdoing and said it stands by its claim that the vaccine is 96 percent effective. It asked the judge to dismiss the claim and pointedly noted that U.S. Justice Department officials have so far not joined on the whistleblower's behalf -- a move that often spells the difference in court.
But the government seems anxious despite Merck’s reassurances – just as the whistleblower suit was unsealed, Age of Autism has learned, health officials awarded almost $2 million to a research team at the University of Georgia. The goal: Find a much better mumps vaccine, in a hurry. “The fact that outbreaks had occurred in populations with over 95% coverage of two-dose [mumps] vaccine strongly suggests that the current vaccine is not effective,” according to project information filed by Biao He, a researcher at the University of Georgia who received the $1.8 million grant.
According to a recent filing by the whistleblowers: "The government has not joined in Merck's current motion [to dismiss the case] and has made no decision on the current Complaint. Instead, it has taken a 'wait and see' approach requesting that it be served with all pleadings, motions and court orders in this case, and that its consent be obtained before the case is settled, dismissed or discontinued.
"While the Department of Justice has chosen to sit on the sidelines of this case for now, both the FDA and its sister agency, the National Institute of Health, have since the complaint was filed begun to take steps to address the failure of Merck's mumps vaccine. The FDA has initiated its own study to determine the vaccine's efficacy, acknowledging that the recent mumps outbreak 'indicat[es] lower vaccine efficacy than previously estimated.' The NIH has gone even further. It is funding the University of Georgia to develop a new mumps vaccine because the recent outbreaks 'strongly suggest that the current vaccine is not effective.'"
Merck continues to state that its mumps vaccine is highly effective, as shown in this ad filed with the court by the whistleblowers; it claims 96 percent efficacy for the mumps portion of the MMRII -- in other words, 96 out of 100 people who get the shot are protected from the mumps virus:
Natalie's PSA took FIRST PLACE in the Notre Dame High School
National Film competition. Congratulations, Natalie. You're an inspiration and you represent autism siblings and Age of Autism in an artistic and professional manner that will take you far. Kim
By Natalie Palumbo
I am 18, a senior in High School, and the younger sibling of a 22 year old brother with low verbal autism. I am busy preparing for graduation, and have good news to share. I was accepted into the Motion Design major at Ringling College of Art and Design, which is my first choice for college. I am currently taking a media arts class at a neighboring high school, and it has been an amazing experience.
The Public Service Announcement that I made for class called “Age Of Autism” was submitted into the Notre Dame High School National Film competition by my teacher Ms. Esposito. I received word last week that my PSA will be among the films being screened in Los Angeles this April. Only runner ups and winners are screened. Ironically, it is the same day as accepted students’ day at Ringling College. Due to the cross country distance, they are sending me my award certificate in the mail. I am thrilled and very grateful to be part of the screening, and am very excited to see if it won. The support I’ve received for my PSA has been wonderful, and I’ve received many lovely notes and letters from families that told me they finally felt represented. I worry about my future, and work very hard to do well. I know my brother will need me, and I want us to have a good life together.
On June 15, Nick, Nicholas and Jonathan Zoccoli are going to hike through New Hampshire's White Mountains in a 26 mile Presidential Traverse to raise money for autism action through Age of Autism. Nick is uncle, and Jonathan and Nicky are cousins, to a terrific youngster with autism - whose Mom is a close friend of AoA's Kim Stagliano.
Nick Zoccoli, a longtime and generous supporter of AoA, has offered to dedicate the hike to his nephew and to donate proceeds raised to AoA.
From Section Hiker: "One of the great hikes in the White Mountains of New Hampshire is called a Presidential Traverse. It’s so-called because hikers climb all of the mountains in the Presidential Range of the White Mountains in one continuous hike that’s nearly 23 miles long with close to 9,000 feet of elevation gain."
CLICK HERE TO DONATE to team Zoccoli via PayPal - no account required. (Firefox & Chrome users may experience difficulty. Use Yellow donate button on right sidebar)
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Send a check payable to Age of Autism c/o Team Zoccoli 41 Northfield Lane, Berlin, CT 06037
Presidential Traverses are usually hiked from north to south, climbing the following sequence of peaks, in order to get the greatest elevation gains over with early on, with hikers starting before dawn and often hiking into the night.
Is the vaccine program there to prevent harm or to foist commercial products on a captive market at the public expense? The parrot cry of health officials trying to bully citizens into vaccinating is that they are putting other people at risk, but it is very easy to call their bluff when they pursue a contradictory policy over nasal flu vaccine and children, a vaccine which sheds and will put in harm's way immune-compromised people and younger siblings. From September this year in the United Kingdom children above the age of two are to be offered a nasal influenza vaccine ‘Fluenz’ which is the same as the ‘Flumist’ many American children already get, and this is to be rolled out for all schoolchildren next year. Here is the text of my recent letter to the British Medical Journal, so far unpublished:
It is deeply disturbing that this senseless project ploughs forward regardless. While government seems to have seized the agenda over influenza vaccination by unwarranted claims of (influenza) mortality [1,2] there are definable risks to the use of nasal influenza vaccine. Manufacturer's product information states among other things :
"FLUENZ should not be administered to children and adolescents with severe asthma or active wheezing because these individuals have not been adequately studied in clinical studies.
"Do not administer FLUENZ to infants and toddlers younger than 12 months. In a clinical study, an increase in hospitalisations was observed in infants and toddlers younger than 12 months after vaccination (see section 4.8).
"Vaccine recipients should be informed that FLUENZ is an attenuated live virus vaccine and has the potential for transmission to immunocompromised contacts. Vaccine recipients should attempt to avoid, whenever possible, close association with severely immunocompromised individuals (e.g. bone marrow transplant recipients requiring isolation) for 1-2 weeks following vaccination. Peak incidence of vaccine virus recovery occurred 2-3 days post-vaccination in clinical studies. In circumstances where contact with severely immunocompromised individuals is unavoidable, the potential risk of transmission of the influenza vaccine virus should be weighed against the risk of acquiring and transmitting wild-type influenza virus."
This is Chapter One in a series of occasional dispatches from An Independent Me, a charity for ASD adults on the front of the autism epidemic. Read the PROLOGUE HERE.
Zero and I stomped down the parking garage stairs near the Travis County Courthouse, footsteps ricocheting through the concrete ramps. Above us, the courthouse stood like a stone sentinel, caressed by shadows of summer foliage, live oaks and panicles of crepe myrtle, this July day in 2012.
The hearing was about jurisdiction. Dr. Wakefield was suing BMJ – the British Medical Journal – for libel. Hack writer Brian Deer, commissioned by the Sunday Times of London, had called Dr. Wakefield a fraud; and Fiona Godlee, editor of the BMJ, reprinted the libelous Times article, embellished it, and profited from it in promotions throughout the United States, including Dr. Wakefield’s home state of Texas. Would the lawsuit play out in a Texas courtroom, or would the proceedings be remanded to England, home base for the libelers? “Mr. Wakefield has been found unfit to practice,” the BMJ team argued. “Why should a Texas court decide what has already been litigated in England?” Beyond that today rumbled the larger question: Who is the fraud, Wakefield or Deer?
I remembered a scenario Dr. Wakefield had created for me, first time we met. “Imagine a village,” he said, “where young adults with autism could live and work, enjoy life, continue to heal, and give back to society. Imagine the residences, the clinic, restaurant, gift store, microenterprise center, the gardens, the wellness center for conventions and outreach. Hang a sign on the gate that says ‘Autism Village.’ Now come back in thirty years. The village is abandoned and the sign is rusty, swinging in the wind, because the epidemic has ceased to exist. That’s the future I’d like to see. Let’s make it happen.”
Note: The judge has set May 22 for an appeal in Austin, Texas of the jurisdiction issue in Dr.
Andy Wakefield's defamation suit against the British Medical Journal, Editor
Fiona Godlee and "journalist" Brian Deer. The case was dismissed by a
judge who said Wakefield was not entitled to sue the British publication in
Texas, but Wakefield appealed. Supporters of Dr. Wakefield will be in attendance.
See here for the latest filings, and stay tuned for updates. -- Dan Olmsted
A few weeks ago, I had the opportunity to speak on a graduate panel. I had been asked to do so by one of my professors in Educational Administration. I will receive my second master’s degree in education next week.
Back in November, I was in his class the night of the congressional hearings on autism. For the first time ever, I kept my phone out and peeked at the emails and texts coming in from friends who were there. I could hardly pay attention, and at one point, I did one of those weird silent “YEAH!” moves with my fist pumped at the most inopportune time. One of my classmates looked at me like I was nuts.
My professor made a comment that night. Something to the effect of never being able to Google his name, and how he could care less. He told us that if we really wanted to get into administration we’d better be ready to be disliked, to take a stand, and to fight for what we believe is right.
I snickered. Been there, done that, I thought.
Our task that night was to write about it, and so I did. I told the whole sorted tale of the last ten years of my life. How it happened, what I did about it, and where I am today. And then I submitted it hoping I wouldn’t get dropped from the class. You just never know what people are going to think.
When we got our papers back, he asked to speak with me privately.
Oh. Crap. Here it comes.
But I was wrong. He wanted to meet me for coffee and learn more.
By James Terminiello
Special to the Times
In 1991, a torpedo blasted the engine room of our little family when doctors confirmed that our 3-year old son Alex was autistic. They said: “The little boy you knew is dead, but a new one has come along whom you will also love.”
That rather oblique optimism was tempered with warnings that Alex might throttle his baby sister in her crib.
Fast forward to today. I recently saw a t-shirt that read “Autism, Different, Not Less.” Clearly, times have changed, and so has what we call autism. The definition of “autistic” has expanded beyond reasonable bounds, leaving those who truly suffer in the dust.
That clumsily worded t-shirt speaks directly to a rebranded autism. The media are full of stories of the “autistic” who writes plays, achieves marvels on the basketball court, or gets swindled by a used car dealer.
What do these items have in common? They have no bearing whatsoever with the experiences and suffering of those who must daily face what I can only call “autism prime.” Such people exist in a swirling, nearly impenetrable world of their own punctuated by violence, lack of articulate speech, weird obsessions, incredible indifference and a hundred other heart-breaking negatives.
When my son was born, autism was still a largely unknown, baffling condition that effectively destroyed the lives of three in 10,000 children. Today, autism has become a Hollywood-fueled, pop-culture phenomenon purportedly impacting as many as one in 95 kids. The attention it gets drives funds in the direction of research and has begotten programs that will give my son some semblance of a life after my wife and I are gone.
So, what’s the problem? It all sounds positive.
but really no. Today, autism seems to encompass individuals with
personality quirks and slight disorders who otherwise carry on with
their lives. That fastidious guy in the office who lines his pencils in
size order and has no friends may be lightly tinged by autism. On the
other hand, he holds a job, owns a car, pays rent and earns $75,000 a
year. Should he really be placed on the autistic spectrum? Read the full editorial Opinion: Expanded definition of 'autism' goes astray.
And thank you to James Terminiello.
Last weekend I had the good fortune to attend two talks by Andy Wakefield a stone's throw from my home in Northern Virginia. One, a fund-raiser, included talks by David Lewis and Patrick Tierney, two friends of our community who know a thing or two about the suppression of unpleasant science.
The other was a public event, at which Josie Nelson and Louise Kuo Habakus also spoke. Louise has the most polished, impressive presentation of how to take responsibility for your own vaccine choices that I've ever heard. I hope she is called on to share it far and wide (and I'm reminded why AOA named her Person of the Year a few years back).
There were a couple of families in the crowd with adorable infants, and if anyone could help them understand the issues, it was Louise.
Andy updated everyone on his defamation suit against Brian Deer and the BMJ, which now awaits a jurisdictional appeal in Texas. One thing Andy said that really struck me: The autism rate is now 1 in 25. It's happening, it's set in stone, nothing will change it in this cohort of kids.
He didn't elaborate, but he didn't really need to. At the rate of increase, how could it not hit 1 in 25? Only the manipulations of the DSM and the CDC will change it, absent a clear-eyed look at the real cause. (Speaking of which, how about Rep. Posey's speech? He is going to be a must-see at Autism One.)
One in 25 -- that's a rate of one autistic child in every homeroom. Just like the old days.
Josie Nelson gave a wonderful intro, a ringing defense of free speech and independent thinking when it comes to vaccine safety. I asked her to share it with me so I could share it with you:
"Last fall, I said to Brooke Potthast and a room of about…oh twelve other people…that one of my goals for 2013 was to help create an educational event around vaccine exemption rights for our local community. I don’t think any of us imagined we’d be standing with Louise Habakus and Dr. Andrew Wakefield just a few short months later. What a treat!
"And why, might you ask, would any sane person choose to talk about this subject in the first place? While increasing numbers of parents, scientists, and health practitioners have questions about the size of the CDC recommended vaccine schedule, the signs and symptoms of vaccine injury, and conflicts of interest in the vaccine industry, to be curious about these issues is an easy route to hearing oneself labeled: threat to public health, unscientific, emotional, and even anti-vaccine. As a consequence, conversations about this important topic tend to take place with pointed fingers and with raised voices, or behind closed doors and in hushed tones; and sometimes, sadly, they don’t take place at all.
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Managing Editor's Note: Below is a sobering look at the future for many familes as exhaustion of mind, body and savings in conjunction with intense care for an autistic adult child becomes untenable. The moderate to severe autism population has few options in our current disability systems. Competitive employment might be a stretch, day programs are often "daybysitting" at best, and housing options are limited, if available at all. The media is starting to wake up to the flood of children headed toward age 22 and the ramifications for state and Federal budgets alike. Not to mention the very real human toll of pain, heartache and worry.
"I'm no longer able to provide supervision." Listen to this Mother - she is decribing the autism so often overlooked - intentionally - by organizations and the media alike. Really listen to her - she is knowledgeable, up to date on how to care for her son and broken hearted. She is us.
Light it up true.
By Anne Dachel
A Tragic story out of Canada
It started with this story on April 26, 2013, Canadian TV: Decision to drop off autistic son gut wrenching says Ottawa couple.
Watch the video here: Exclusive: Couple leaves autistic son in care of the state
(Her adult son with autism functions on the level of a two year old.)
"Decision to drop off autistic adult son 'gut-wrenching', says Ottawa couple:
Watchi this video and listen to the mother talk about how Philippe recently wandered away. He is in need of constant supervision.
"Philippe requires nursing care for his diabetes as well as his bathing, toileting and personal care. His food intake also has to be strictly managed because of his diabetes."
"Parents of autistic adult son not alone in their desperation, say advocates"
During his 30 years in Congress, many of them as Chairman of the Committee on Government Reform, Burton was involved in over 20 hearings on autism. Burton’s grandson developed autism after receiving 9 vaccines on the same day. His pursuit of truth and passionate leadership helped define and inspire the modern autism movement.Dr. Weldon retired after 14 years in Congress, where he was a founding member of the Congressional Autism Caucus. He spent years working with leaders in the autism community to discover any factors that contribute to its occurrence as well as explore all available research into its prevention, including removing thimerosal from vaccines.Currently, in his third term, Congressman Bill Posey’s political career has been defined by a “take-charge attitude,” according to the Washington Post. In the November 2012 Congressional hearing on the rise in autism, Posey’s take-charge attitude is evident. Dr. Weldon endorsed Posey to succeed him.