E-Newsletter June 2008 #1 - Families Helping Families with Autism
Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.
We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.
We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
In this edition:
| 1 | Green Our Vaccines Rally Huge Success |
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On June 4, 2008 the Green our Vaccines March & Rally occurred in Washington DC with hosts Jenny McCarthy and Jim Carrey. Rally speakers included: Robert F. Kennedy Jr., Dr. Jay Gordon, Dr. Jerry Kartzinel, Dr. Boyd Hayley and the hosts Jim & Jenny. |
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| 3. | Family & Friends Campaign - One More Week to Go! |
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We would like to thank everyone who has participated in TACA's third annual Family and Friends campaign. We have one more week to go - help us make our goal - we're almost there!
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| 4. | Big Wave Surfer Laird Hamilton and Steve & Barry's Launch The Wonderwall Collection, A New Surf & Skate Apparel Line |
| Line Includes Unique Tee That Will Benefit Autism Awareness & Help for Families The world's greatest big wave surfer and epic waterman Laird Hamilton is teaming up with Steve & Barry's to launch the WONDERWALL collection, a surf and skate apparel line for men that will debut May 15, 2008. A water sports pioneer with an unquenchable thirst for adrenaline, Hamilton is known for pushing the boundaries of water sports with awe-inspiring feats. He was the first to complete a 360-degree loop on a surfboard, created tow-in surfing to tackle huge waves such as massive 70-footers, and made marathon-like paddleboard journeys around the world. The WONDERWALL collection represents Hamilton's first clothing line, inspired by his sense of style, attitude and overall approach to life. Hamilton partnered with a team of Steve & Barry's designers to create a cool and comfortable collection of high quality graphic t-shirts, board shorts, woven shirts, cargo shorts, accessories and much more. Authenticity and utility are of the utmost importance to Hamilton, who has put his signature board shorts to the ultimate test during his daily surfing and workout routine. The 165-item WONDERWALL collection will be sold exclusively at all STEVE & BARRY'S locations, with every item priced at $9.98 or less. Visit www.thisiswonderwall.com for more information on the line and store locations. The WONDERWALL collection takes its design inspiration from Hamilton's passion - tackling water sports and skating challenges in some of the world's most beautiful landscapes. The line plays on the themes and colors of natural environments such as Maui, where Hamilton grew up and still resides with his wife, professional volleyball player and model Gabrielle Reece, and their daughters. Over 30 original graphic t-shirts in the collection play off Hamilton's approach to life, such as his personal tagline, "Every man is equal before a wave." Board shorts featuring edgy and artistic details are also at the core of the collection. Hamilton said, "Wonderwall represents everything I'm about - not only what I wear in and out of the water every day, but also those aspects of life that I'm most passionate about. I'm excited to work with Steve & Barry's to create clothes that look great and are comfortable, but also affordable. Guys that live the surf and skate lifestyle want to spend their time tracking the next big swell or finding a new skatepark, not worrying about having enough money for t-shirts and shorts." |
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| 5. | Steve & Barry's featured Wonderwall T-shirt |
| This t-shirt's proceeds will benefit TACA & the families we serve. Laird's Wonderwall t-shirt that benefits TACA is available on at Steve & Barry's stores. Check www.steveandbarrys.com for a location near you. Stay tuned for information on TACA events in Steve & Barry's stores across the country. | |
| 6. | Sick Hamsters: More Evidence That Thimerosal Harms Infants |
| By Mark F. Blaxill Reprinted from Age of Autism In his best-selling book Evidence of Harm, our Age of Autism colleague David Kirby saved his "final note" for a comment on the global legacy of thimerosal exposure in vaccines. In the book's closing passage, he wrote: "If thimerosal is one day proven to be a contributing factor to autism, and if U.S. made vaccines containing the preservative are now being supplied the world over, the scope of this potential tragedy becomes unthinkable. "The United States, at the dawn of the twenty-first century, is not exactly the most beloved nation on earth. What if the profitable export of our vaunted medical technology has led to the poisoning of hundred of thousands of children? What then?" As Bush Administration officials have moved with surprising determination to defend the safety both of the current flu vaccine program (which targets expectant mothers with injections of ethyl mercury) and past vaccine program recommendations (which permitted the injection of unintentionally excessive amounts of ethyl mercury in infants), one often overlooked implication of the Administration's policy has been to make Kirby's nightmare suggestion a reality. U.S. vaccine manufacturers have continued to ship thimerosal containing vaccine formulations all over the world, in effect offering a defiant double standard of mercury risk for infants from rich countries as compared to poor countries. |
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| 7. | Two Die Following Gardasil Shots |
| Gardasil has been implicated in the deaths of two more young women, the European Medicines Agency (EMEA) has reported. Though no official cause of death has been listed, the young women apparently died shortly after receiving Gardasil, and the EMEA is characterizing their deaths as "sudden and unexpected." The two deaths bring the total number of fatalities possibly linked to the Merck cervical cancer vaccine to five. In the U.S., three young women have reportedly died after receiving Gardasil. However, there could be more such incidents, as health officials believe that adverse effects of medication are widely underreported. Gardasil was approved by the U.S. Food & Drug Administration (FDA) in June 2006. At the time of its approval, Merck & Co. said that clinical trials had proven the vaccine to be between 90-100% effective in preventing the transmission of some strains of HPV that cause cervical cancer. The approval of Gardasil was much hyped, with Merck claiming that it had the potential to eventually eliminate most cervical cancers. Just weeks after its approval, the U.S. Centers for Disease Control (CDC) recommended that all young girls between the ages of 11 and 12 receive the Gardasil vaccine. Merck was more than happy to echo the CDC recommendations, and actually began an intensive lobbying effort to convince state health authorities to make Gardasil vaccinations mandatory for young girls. Merck has made similar efforts in Europe. Merck's heavy promotion of Gardasil has been effective, as some analysts estimate that Gardasil could net the company as much as $1.4 billion in its first full year on the market. But Gardasil may not be as safe as Merck claims. A 2007 analysis by Judicial Watch of Gardasil adverse event reports revealed that there had been at least 3,461 complaints of adverse reactions to the Gardasil vaccine, and there could have been as many as eight deaths attributable to Gardasil. According to Judicial Watch, in several instances, blood clots were reported to have occurred after the administration of Gardasil. The Gardasil side effect reports also included 28 women who miscarried after receiving Gardasil. Other side effects reported to the FDA included paralysis, Bells Palsy, Guillain-Barre Syndrome, and seizures were also reported. Oddly, Judicial Watch was only able to obtain the FDA's reports on Gardasil after it filed a Freedom of Information Act request with the agency. As some have pointed out, Judicial Watch is a conservative organization with an agenda. But Judicial Watch did not fabricate these adverse event reports, and the seriousness of some of them indicate a need for further investigation. In May, Dr. Diane Harper, a top expert on the HPV who, while working as a professor at Dartmouth College, served as a researcher on study trials for Gardasil, questioned efforts to make the vaccine mandatory. In an interview with a Florida TV station, Dr. Harper said that there has not been enough post-marketing surveillance of Gardasil to insure that it is free of side effects that could prove particularly dangerous to young girls. "We don't know yet what's going to happen when millions of doses of the vaccine have been given and to put in place a process that says you must have this vaccine, it means you must be part of a big public experiment. So we can't do that until we have more data." she said. |
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| 8. | Researchers Fail to Reveal Full Drug Pay |
| Reprinted from the NY Times A world-renowned Harvard child psychiatrist whose work has helped fuel an explosion in the use of powerful antipsychotic medicines in children earned at least $1.6 million in consulting fees from drug makers from 2000 to 2007 but for years did not report much of this income to university officials, according to information given Congressional investigators. By failing to report income, the psychiatrist, Dr. Joseph Biederman, and a colleague in the psychiatry department at Harvard Medical School, Dr. Timothy E. Wilens, may have violated federal and university research rules designed to police potential conflicts of interest, according to Senator Charles E. Grassley, Republican of Iowa. Some of their research is financed by government grants. Like Dr. Biederman, Dr. Wilens belatedly reported earning at least $1.6 million from 2000 to 2007, and another Harvard colleague, Dr. Thomas Spencer, reported earning at least $1 million after being pressed by Mr. Grassley's investigators. But even these amended disclosures may understate the researchers' outside income because some entries contradict payment information from drug makers, Mr. Grassley found. In one example, Dr. Biederman reported no income from Johnson & Johnson for 2001 in a disclosure report filed with the university. When asked to check again, he said he received $3,500. But Johnson & Johnson told Mr. Grassley that it paid him $58,169 in 2001, Mr. Grassley found. The Harvard group's consulting arrangements with drug makers were already controversial because of the researchers' advocacy of unapproved uses of psychiatric medicines in children. |
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| 9. | FDA warns about toxic effects of mercury in dental fillings |
| WASHINGTON - Silver-coloured metal dental fillings contain mercury may cause health problems in pregnant women, children and fetuses, the U.S. Food and Drug Administration said yesterday after settling a related lawsuit. As part of the settlement with several consumer advocacy groups, the FDA agreed to alert consumers about the potential risks on its website and to issue a more specific rule next year for fillings that contain mercury. Millions of North Americans have the amalgam fillings in their teeth. "Dental amalgams contain mercury, which may have neurotoxic effects on the nervous systems of developing children and fetuses," the FDA said on its website. |
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| 10. | What Autism Does to a Mother |
| From Redbook Magazine Nicole Kalkowski knows that beyond the stress, fear, and family turmoil that come with learning that your child has this devastating disorder, there is also a devastating aloneness. In our second installment of Living With Autism, we follow this mother of three as she struggles to save her son and finds help - for her children and for herself - in unexpected places. In part one of REDBOOK's series about raising a child with autism, Nicole Kalkowski and her family were overcome with shock and confusion when their outgoing and vivacious toddler, Ryan, began to lose his language and social skills; his sudden problems with speech and disinterest in hugs from his sisters were just the start of his perplexing symptoms. After an agonizing search for answers, Nicole and her husband, Tim, discovered that Ryan, now 3, has what many call regressive autism - he appeared to be developing normally, but began to backslide at 17 months. In this installment, we witness the painful toll Ryan's condition has taken on Nicole and follow her and her Las Vegas family as they navigate the murky waters of treatment. On a Sunday morning in September, about 30 parish-ioners squeeze into a small room located just off the main sanctuary in Faith Lutheran Community Church. Nicole Kalkowski and her family have been active members of the church for the past five years. And today, the congregants have gathered to pray for Nicole's son, Ryan. Nicole sits on a small altar with daughters Ciera, 8, and Ella, 6, huddled together on her lap. The 35-year-old mom wishes her husband, Tim, could be with her, but the couple agreed that it would be best for him to stay home with Ryan, who, in a packed church, would have been screaming and crying inconsolably. Slowly, the church members begin to hold hands and form a circle around Nicole and her girls. Most people have tears in their eyes. No longer able to keep her composure, Nicole starts sobbing. As she wipes away her tears, everyone bows heads and listens as Bible passages are read. Then, a teacher at the church school presents Ciera and Ella with a book of prayers created by their classmates. As the vigil ends, the well-wishers hug Nicole and her daughters. Ciera's eyes well up as she whispers to her mom, "Ryan is really special." |
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| 11. | Vaccine Watch |
| Posted by Sharyl Attkisson After a decade of denying any possible association between vaccines and autism, the government quietly settled a vaccine-autism case last fall. When news of the case leaked out to the public months later, government officials labelled the case of Hannah Poling an "anomoly." The truth is, nobody is in a position to know whether Hannah's case is an exception. Government officials have told CBS News that they have not tracked vaccine-autism claims to see how many of them might involve children with the same undetected mitochondrial disorder Hannah had... one that may have made her susceptible to side effects from vaccines, triggering her autism. Government officials have also acknowledged to CBS News that they haven't looked for common denominators in other autism-related cases which have been compensated in federal vaccine court. Yes, there are other cases that have been paid. As CBS News has reported, the government has been settling vaccine injuries that resulted in autism and/or autistic symptoms since at least the early 1990's, while at the same time telling the public there is no cause for concern. Not all of the cases are published, but some of them are and can be found by searching legal case databases. That... with the help of some well-placed sources... is how CBS News turned up at least nine more cases... and counting. Considering that only a tiny fraction of vaccine-autism claims find their way to the little-known vaccine court, these cases are just a sampling of the total that may actually exist in the population. Further, according to knowledgeable sources, vaccine injuries compensated in the past due to encephalopathy (or brain damage) "often" resulted in autism, but the autism label was not used. Again, the government does not track how many of the encephalopathy cases involved children who got autism or ADD after their vaccinations. One important factor is often lost in the discussion of a handful of cases: the fact that the debate has shifted from whether vaccines have any relationship to some cases of autism... to what is the role of vaccines in some cases of autism. And how big is the pool of cases. If vaccines can trigger autism in any way, directly or indirectly, that contradicts all the rhetoric and dogma heard from many public and government health officials for the past decade. And it supports what many other researchers have been saying for a decade, often to deaf ears, even after they published in peer-reviewed scientific journals. Which is probably why Hannah's case is resonating under the radar in the medical community. A government conference has now been scheduled for later this month to examine mitochondrial disorders like hers and autism or neurological "triggers" (i.e. vaccines). See below. Workshop Mitochondrial Disorders of Childhood: Testing, Potential Relationships to Autism Spectrum Disorders, and Triggers for Neurological Deterioration June 29, 2008 Workshop Goals and Objectives "Mitochondrial Disorders of Childhood: Testing, Potential Relationships to Autism Spectrum Disorders, and Triggers for Neurological Deterioration" is a workshop to be held on Sunday June 29th after the close of the United Mitochondrial Disease Meeting in Indianapolis at the Hyatt Regency Indianapolis. The workshop will convene 11 experts in mitochondrial disorders or autism to discuss how the neurology of mitochondrial disorders might inform autism research. The conference is sponsored by a number of Federal agencies including DHHS, CDC, FDA, NINDS and NIMH. Observers are welcome as seating allows. Location Hyatt Regency Indianapolis |
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| 12. | WHAT DISEASE DO YOU WANT YOUR CHILD TO GET? |
| By Julie Obradovic Reprinted from Age of Autism In the aftermath of the Green the Vaccines Rally, the inevitable criticism of the participants and their purpose swooped in with the force of the thunderstorm that struck DC that afternoon. In the recent years of being an "Autism activist", I have found it much easier to simply steer clear of this criticism. Message boards, Bloggers and editorials that paint me as a fear-mongering fool who uses her child as an experiment only put me in a bad mood. Initially I was compelled to argue, fighting for my dignity and looking for compassion. What I realized is that is exhaustive work, and frankly, quite fruitless, especially when the bully you're battling is anonymous. And so it has been that I have chosen to ignore the negativity and focus on the task at hand: finding a way to help families with Autism improve the health and well-being of their children, themselves, and their finances. None-the-less, occasionally it becomes necessary to stand up and be heard. It's as if the opposition got a new memo on how to belittle one of "us", and frankly, it's annoying. For starters, as JB Handley addressed in his essay "Moving the Goal Posts", we are now guilty of "changing the game". Evidently we can't make up our minds about what part of the vaccine or vaccines cause Autism. Is it the mercury? Is it the aluminum? Is it both? Is it too many vaccines in combination? Somehow our inability to stick to one story makes us inauthentic. |
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| 13. | CNN: Should I Vaccinate My Baby? |
| By Elizabeth Cohen Five years ago, Kathye Petters-Armitage's first child received the exact vaccinations on the exact schedule recommended by her pediatrician. But when she gave birth to her second child, Petters-Armitage had a change of heart. In the intervening two years, she'd read a lot about concerns that vaccines cause autism and decided to ask her pediatrician to give her new baby fewer shots spread out over a longer period of time. "I wasn't a hundred percent convinced there was a link between autism and vaccines," said Petters-Armitage, of Santa Clarita, California. "But I didn't want to be one of those parents who found out the hard way." | |
| 14. | Helping HANDS for Autism Act Introduced in the House |
| By Carin Yavorcik Bill provides for lifespan autism services and awareness Members of the U.S. House of Representatives introduced a companion to the Helping HANDS for Autism Act this week. The Helping HANDS for Autism Act (HR 6282) is a three-part legislative package designed to support families dealing with autism spectrum disorders, increase awareness among first responders and public safety officials and provide housing options and services for adults with autism. It was introduced by Reps. Kay Granger (R-TX), Jim McGovern (D-MA), Chris Smith (R-NJ), Mike Doyle (D-PA), Dan Burton (R-IN) and Ruben Hinojosa (D-TX). The bill is a companion to S 2950, introduced in the Senate last April. An estimated 30 million people in the world have an autism spectrum disorder, 1.5 million in America alone. Every day in America, 60 families learn their child has autism. These families face challenges of care, support, education, financial hardship and medical and health care issues that make autism a national public health issue. Though there is no cure, autism is treatable and individuals with autism have tremendous potential. What the Bill Does: 1. Creates a grant program to provide "autism navigator" services to help families navigate the web of services and care they need. Navigators will help guide families to current health, education, housing and social services that are often available to individuals on the autism spectrum. Too often, families feel overwhelmed after diagnosis and often lost as to where to turn for help. The program will help connect families to important treatment options soon after diagnosis, help families identify education options, and help coordinate individuals' care and community support. 2. Provides for the development, demonstration and dissemination of a standard curriculum for the training of first responders (police, fire departments, emergency medical technicians and other volunteers) in assisting individuals with autism and other cognitive behavioral disabilities. It provides grants to states and local governments to support training of first responders. People with developmental disabilities, including autism, have up to seven times more contact with law enforcement officers than others, according to an article in the F.B.I. Law Enforcement Bulletin in April 2001. That is why training is so important. Something as simple as first responders turning off flashing lights and sirens on a police car could make the difference between a peaceful or chaotic encounter. 3. Creates a HUD task force comprised of appropriate national and state autism advocacy groups, community-based organizations and parents who are charged with developing a housing demonstration grant program for adults with autism. The goal of the grant program is to provide individualized housing and services to adults with autism spectrum disorders. |
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| 15. | Greening Vaccines |
| Hot Topics from The Deirdre Imus Environmental Center for Pediatric Oncology Through a new "Greening Vaccines" program, The Deirdre Imus Environmental Center for Pediatric Oncology® is actively working with doctors, parents and legislators around the country on safer vaccinations and vaccine protocols for children. If You Are Preparing to Immunize Your Child, Consider the Following: 1. Discuss with your doctor which vaccines are necessary for your child. After all, one size doesn't fit all. 2. Avoid immunizing when your child is sick or recently recovered from an illness. 3. Do not give your child a vaccine containing thimerosal. Insist on thimerosal-free vaccines. Those on the CDC routine immunization schedule should be thimerosal-free. Those not on the routine schedule, including the flu shot, typically contain thimerosal. If you give the flu shot, a thimerosal-free version may need to be special-ordered by your pediatrician. 4. Always ask for and review the vaccine's package insert. Read the section on ingredients so you know what is in the vaccine and have the opportunity to ask the doctor any questions. Check for the following potentially harmful ingredients, which are called adjuvants: aluminum, antibiotics, and formaldehyde. In addition, if you are aware that your child is allergic to monosodium glutamate (MSG) or eggs, let your doctor know, and check the package insert for these ingredients. Note that all flu vaccines and the MMR vaccine contain egg protein. If you have questions, do not be intimidated from asking your doctor. 5. Only get one vaccine per visit. This may require multiple office visits, but giving one at a time (such as one vaccine per month) reduces any complications from the interaction of multiple vaccines. It will also allow you to know precisely which vaccine caused a problem if there are any adverse reactions. We still don't know the unique vulnerabilities of each individual, which may cause complications from even one vaccine, because research hasn't been done yet to identify those biological markers that would tell us if a child has a pre-existing disposition. 6. Ask the doctor to check for titers. Via a simple blood test, the doctor can check to see if your cis already immune to a specific disease via previous exposure or vaccine. If the titer shows your child is immune, further vaccination (boosters) for that specific disease may not be necessary. For more information, visit www.dienviro.com. |
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| 16. | Personal Note from Lisa Ackerman |
| For over 8 years, TACA has been providing support and program services to families affected by autism. We have jumped through some important milestones this past quarter that I wanted to share with you: 1) 10K: TACA now has passed the 10,000 mark. That is the number of people we serve across the U.S. This is an important milestone as this time last year we support under 3,000. Our continued growth will bring us many challenges. I am confident we will meet each one head up and do our best to meet families needs and continue the TACA mission. 2) TACA Office: Since our inception, it has been a goal to focus the funds raised towards families affected by autism. This month we moved into our first office. This office will enable us to work more efficiently, provide ongoing parent education and infrastructure to support the increasing number of families we serve. 3) Call center for families: with our new office comes our new call in center to help families. We have a dedicated team to return calls and emails to help families achieve positive outcomes in their autism journey. 4) Events & Efforts: TACA's last 90 days has been historic. May 3 Medical conference with over 400 attendees, Autism One Mentor parents - our largest conference of the year, TACA 5th annual family picnic with over 2200 attendees and the DC Green Our Vaccines Rally on June 4th with over 8500 attendees has had us all extremely busy. We have a lot more in store for the balance of 2008. On a personal side, Jeff will finish fourth grade on Friday. His placement at a regular ed 4th grade at the same campus since Kindergarten has been a wonderful experience for him. Jeff still continues to struggle with some areas (i.e. reading comprehension, math word problems, social skills, and some others) we have seen him make great strides. Jeff continues to rise to the occasion, and with the right supports in place, he continues to progress and learn along side his typical peers. He loves school and that always makes me smile. I marvel at his mostly amazingly positive attitude (I have something to learn from him) and his ability to make friends. The activities at TACA have been a fast and furious pace. We are holding our own. The picnic and rally have to be my most favorite events this year. I love the picnic because we had such a perfect day with all our families. It is always wonderful to see everyone and watch the kids improve year after year. What I like most is our TACA families have a day to relax and enjoy their families. In the next few weeks, we will be posting a new video of the event to share with all our TACA friends. The Green Our Vaccines rally was a historic day for me and thousands of other families like mine. Over the past nine years on the autism journey, this ranks as my favorite day. The posters, families at the event were just amazing. Watching the thousands of families march and participate in the press conference with the amazing speakers; Robert F. Kennedy Jr., Dr Jay Gordon, Dr. Jerry Karzinel, Dr. Boyd Hayley, and our hosts; Jim Carrey and Jenny McCarthy were amazing beyond words. Watching the press watch us and what was reported was an experience I will never forget. The TACA front page as a wrap up of the over 40 articles and 500 news stories carried across the U.S. on this tremendous effort. I feel very fortunate to have been part of these efforts and work with HEAL, Moms Against Mercury, Generation Rescue and the over 45 other supporting organizations. I hope you all get a chance to watch the video links, see the pictures, watch the news stories and view the articles capturing the days festivities. Most importantly I really want to thank Jenny, Jim and their family members for making this event happen. Especially a big hug and thanks to a boy named Evan who was a trooper all the way! We will have more call to action and ways to keep this movement going in the very near future. Stay tuned! I hope this update finds you and your family well and ready for a wonderful summer. More TACA enews and updates will be coming your way soon. Lisa Ackerman - Jeff's mom
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Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.
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