Generation Rescue, Autism Action Network, Illinois Biomedical Kids

ACTION ALERT – PART 3
THE WHITE HOUSE

For far too long, medical organizations such as the American Academy of Pediatrics and governmental health agencies have disregarded the accounts of thousands of family members of children with autism, rejecting their personal experiences of regression, presence of other medical conditions often occurring with autism and the treatments they have seen to be most promising.

Many scientific studies have found that children with autism often suffer from multiple medical conditions including gastrointestinal, immunological, mitochondrial and other underlying pathologies. When appropriately diagnosed and treated with the help of dedicated physicians; thousands of children are improving and some are even recovering to the extent they no longer meet the diagnostic criteria of autism.

We believe there is a better way and we are hopeful that President Obama will too.
We are encouraged by the President’s following comments that he made recently;
"Promoting science isn't just about providing resources -- it's also about protecting free and open inquiry. It's about letting scientists like those who are here today do their jobs, free from manipulation or coercion, and listening to what they tell us, even when it's inconvenient -- especially when it's inconvenient.

"It is about ensuring that scientific data is never distorted or concealed to serve a political agenda -- and that we make scientific decisions based on facts, not ideology."
This is a refreshing statement that brings hope for so many of our families who have waited for independent scientific investigation into autisms’ causes and treatments.
Now, it’s up to each of us to speak up for what our children truly need and who should be deciding their medical care.

Please take action today to impact the future of autism research and treatments to actually reflect the medical needs of our children.

Parents of children with autism are advocating for legislation that:

• Includes findings consistent with most up-to-date scientific investigations regarding Autism Spectrum Disorders emphasizing essential areas of promising research.

• Establishes a National Autism Executive Committee that would provide stakeholder input into research and policy initiatives and future research allocations made through Combating Autism Act appropriations.

• Advances research initiatives that help to identify sub-cohorts, biomarkers, and etiological factors including environmental and genetic through actual clinical investigations of persons with Autism Spectrum Disorder.

• Requires the establishment of continuing medical education in treating Autism Spectrum Disorders to further the quality of care and to reflect up-to-date scientific findings.

• Requires the evaluation and treatment for other medical conditions which may occur with autism, such as gastrointestinal, immunological and metabolic conditions.

• Requires insurance coverage for diagnostic, medical and therapeutic services such as speech, occupational therapy, physical therapy, nutriceuticals and Applied Behavior
Analysis in addition to other medically necessary services when prescribed by a physician.

If you want to speak out for change for your child with autism, please go to WhiteHouse.Gov and leave your message for the Office of Public Liaison:

• Tell them you support Generation Rescue, Autism Action Network (AAN) and Illinois Biomedical Kids as they work directly with Senators Durbin, Casey and the Office of Public Liaison to relay parental concerns on the current draft bill.

• Write a short message describing your personal story and the importance of allowing parents to make the medical decisions necessary for their children.
To read more on the original Action Alert from Generation Rescue and Autism Action Network (AAN) and to access the current draft legislation, go HERE.

Together we must raise our voices and help to ensure a brighter future for our children. Change does not happen if you don't act!

GO TO www.ageofautism.com FOR PERIODIC UPDATES ON THIS ALERT. 

Comments

[Sarah Ranzau]

Hi All,

I too sent a letter. I will post any response I receive. Your letters are very inspiring to me. I hope they also inspire action that is long overdue.

Sarah

[Val Boergesson]

another letter...
Dear President Obama,
First, I am thrilled that you are our President, on inauguration day, I finally felt as if there may be a President that will address the autism epidemic as well as many other issues.It was an amazing day for America and I am filled with alot of hope that we are on the right path. Beyond being a brilliant man, I can see that you are also a good one and that truth is something you will strive to find no matter what the cost.
As a mom of a child with autism, I am begging for you to sit down with Generation Rescue, The Autism Action Network and Illinois Biomedical kids.
My son had a normal development, vocabulary of 90 words, ahead in every developmental milestone, was very bright and normal. After his dpt vaccine, he screamed, cried, ran a high fever and within a few weeks time, spiraled into a world of silence and autism, lost all language, all understanding, all play skills, a total blank slate. The connection was clear and obvious it was a vaccine reaction. He remains to this day, at almost 14 years of age, severely affected with autism, no language, multiple medical problems including seizures, severe gastrointestinal, immunological, and urological problems.
Year after year we hear of "studies" and I use the term loosely, that say there is no link between vaccines and autism, when in fact there are hundreds of studies that show a link between thimerosal and neurological damage. The pharmaceutical companies have been running the studies and the CDC for years and there has NEVER been any studies done by our government that has not been tainted by big pharma. There has never been one study done on the cumulative effect of vaccines as we ramped up our schedule to include over 30 vaccinations! Yet, if you ask any parent with a child with autism, most will tell you a story similar to mine, of a child that was fine, received a vaccine and is lost forever.t Our government continues to ignore and abandon the parents and children, and deny that our stories are true. How can we all be wrong? Please I beg you to have a sit down with JB Handley from Generation Rescue, an incredible father of a child with autism. If you just give him a few hours, he will change what you think about autism, our vaccine policy, the CDC and the autism epidemic.
We are facing a national crisis of epidemic proportions now and as these kids get older and NOTHING is being done about it!! Enough studying worthless genetics, genetic disorders do not rise to epidemic proportions, they stay constant. The amount of kids being diagnosed is staggering. The amount of parents saying it happened after a vaccine is also staggering and it is time for our government to take responsibility and start looking into what the parents know, for certain kids, vaccines are not safe. I am not anti vaccine, I am for safe vaccines and a vaccine schedule that makes sense. We need to research the environmental triggers. Why can we admit that lead in toys is unsafe, mercury in drinking water, fish and coal burning plants is unsafe, but it's safe to inject it into our kids at extremely toxic doses?
We need real research, real action and you. We need a President who is not afraid to do research that may point to a very unpopular outcome on why we have so many children affected with autism. I believe you are the man for the job. Yes, I do.
Sincerely,
Valerie Boergesson

[Kelli Ann Davis -- UPDATE -- RESPONSE FROM THE WHITE HOUSE]

All,

Here is the e-mail I sent to my White House contact a few hours ago:

"First, I haven't heard a response from Karen yet regarding the initial e-mail I sent to you a few weeks ago and I'd like to follow up on that issue.

Second, Generation Rescue (along with Autism Action Network and Illinois Biomedical Kids) issued an Action Alert to the autism community yesterday directing them to your website and asking them to leave comments expressing their desire to have the White House engage with us on some important legislation that is poised to be introduced by Senators Durbin and Casey. The initial draft bill was sponsored by President Obama while he was still a Senator.

http://www.ageofautism.com/2009/03/generation-rescue-autism-action-network-illinois-biomedical-kids.html

I'd like to report back to our community regarding the Alert and be able to tell them 1) you've rec'd the messages and 2) you are scheduling a meeting with our organization to discuss this specific issue as well as others."

White House response:

“Please know that Ms. Richardson and her team are working diligently to respond to all request received.”

Followed by:

“Hi Kelli Ann, Kareem Dale and I will follow-up with you over the phone soon. Please don't hesitate to contact me at the number below in the interim.”

ANYONE WHO RECIEVES A RESPONSE FROM THE WHITE HOUSE -- PLEASE POST IN THE COMMENTS SECTION HERE.

Keep writing the White House!!!!

And as always, I’ll keep you posted!

Kelli

[Teresa Conrick]

Done and anxious to hear some good news!

[Laura]

Keep the letters coming! You are making a difference for a generation of children.
I cannot imagine that if President Obama receives thousands of these heart-felt letters, he will not act in the best interest of our children and families. With sincerity and wisdom from our experience; let us raise our unified voices and speak truth to power today. Together, may we change our children's future.

[Julie Penny]

My grandson was progressing normally but after his last round of vaccinations when he was two, suddenly regressed. He started turning in circles, lost eye-contact, stopped speaking, stopped playing with his toys, was locked in his own world, was hand-flapping, couldn’t sit still for an instant. Didn’t understand anything that was said to him. Rubbed objects across his mouth. Ground his teeth. Could no longer hold his spoon. Had intestinal problems. He was a changed child. We were all devastated by this change and then by his diagnoses of autism. He’d fallen into an abyss. His first improvement started when my daughter-in-law and son put him on a gluten free, casein-free diet. He is now five. He takes supplements, Vitamin B12 shots, probiotics for his tummy, very mild chelation and it’s improved his condition greatly. From becoming non-verbal after his shots, he can even say some sentences and appears to be making generalizations. During that first year I thought we’d never get him back. His progress is ATTRIBUTABLE TO HIS PARENTS, NOT to the Oh-so-compromised American Academy of Pediatrics, CDC, et al.…I have banker boxes filled with scientific studies on how kids improve on these regimes. I’ve attended dozens of conferences where doctors, scientists, researchers et. al. have made presentations of their work. I constantly read the scientific literature, and understand it all having had biology, anatomy and physiology, microbiology, neurology, psychobiology, statistics, etc. and there is no doubt but that with the vaccines and all the other toxins in our environment that our kids have become the “canaries.” They are being wrecked.

I SUPPORT Generation Rescue, Autism Action Network (AAN) and Illinois Biomedical Kids and support the legislation they are advocating. IT IS LONG OVERDUE!!! You, President Obama, would be compounding the problem—indeed condemning our kids to FURTHER MISERY if you did not pass, en toto, Generation Rescue’s, AAN’s et al.’s legislation that they are advocating.

PLEASE LISTEN TO US.

[K Fuller Yuba city]

Done,
5000 characters is not enough to cover the last 16 years of our sons life.

[Autism bio-med mom]

The autism czar will be a Big Pharma stooge.

[Lisa]

Autism Czar rumors was Grinkers wife. Positions can easily be filled by individuals completely on the other side.

[Kecia]

Done!
Here is my letter.

Dear Obama Administration,
First of all I would like to say that I voted for President Obama and fully believe that he and his administration can lead this country in a way that we can better the future for our children and grandchildren. I realize the task at hand is not an easy one and there are many obstacles that we, the American people, must now overcome. One of those obstacles is the health of our nation's children. As a mother of a son with autism I have to fight every single day for my son's health, education, and acceptance. We need unbiased research into the causes and treatments for autism. Studies that are done by independent researchers and not funded by Pharmaceutical companies. Our children grow older and yet there still are no answers on what is causing this epidemic and what we can do to stop it.

I support Generation Rescue, Autism Action Network (AAN) and Illinois Biomedical Kids as they work directly with Senators Durbin, Casey and the Office of Public Liaison to relay parental concerns on the current draft bill. Parents need to have a say in their child's medical treatment and care, children with autism should have evaluations for other co-morbid conditions that are prevalent with autism spectrum disorders including metabolic dysfunction, gastrointestinal disease, and immune deficiency, and treatments for autism should be covered by insurance so that families aren't going bankrupt as they try and provide their child with the best opportunities to live a functional life.

Please Mr. Obama, help our nation's children become well again so that they can grow up to lead the lives that they deserve. No longer can we ignore the autism epidemic, no longer can we deny that the environment and toxins are hurting our children, and no longer can our country afford to not stand up and say 'what have we allowed to happen to this generation of children, they are sick and we need answers'.

Thank you for your time and for your service to our country.
Sincerely,
Kecia Johndrow

[Teresa Conrick]

Ellie,

Your letter is beautiful and perfect! Thank you!!

I need to write and send one too---

[Allison]

Thanks for all of your participation! We really want to communicate that our kids must come 1st in any legislative efforts.

Thank you for sharing your letter Ellie.

John I think we all appreciate your efforts, and the struggles you go through. I can't imagine how difficult life would be with 6 on the spectrum. I read your letter to the president and you have some excellent points and your references to have him think of his daughter in that manner was extremely effective. I do agree with Erik though as it would entirely depend on "who" was picked as "czar". I'm just not that trusting anymore of just "one" person, even task forces with one of us on the board are shutting us out. We need something, someone or a group of individuals wholly representative, and have to keep asking/fighting for it.

[Lin]

DONE!!

[Laura]

Ellie,
that is a great letter!

[Ellie]

THANK YOU FOR YOUR WORK! I supported you!

Here is my letter:

Dear Obama Administration:

I have a comment and I would actually love your response! I am writing in support of Generation Rescue, Autism Action Network (AAN) and Illinois Biomedical Kids as they work directly with Senators Durbin, Casey and the Office of Public Liaison to relay parental concerns on the current draft bill.

I am a mother, I voted for you, Barack Obama, I believe this country is beginning to make the right moves towards progressive, accountable, responsible change that has been missing. Thank you!

My almost 3 year old son has been diagnosed with autism and my family and my friend's families need our government's support and stewardship to promote and sponsor UNBIASED research for the causes and treatments of autism. The number of families suffering from this disorder is unacceptable in our advanced society.

An autism diagnosis stains the days of childhood and claims the health of our kids while it steals parent's financial security and peace of mind. Many of us are trapped, unable to secure health coverage, unable to access services that would help our children and ISOLATED because our pediatricians are supported by the AAP and other bodies who turn away from FAIR research without BIAS.

Until the US government promotes and funds research without influence from BIG PHARMA and other bodies - your administration is saying that we don't matter, that research done in the 1930's is good enough for our kids today and that the epidemic invading my home and thousands of other homes, is acceptable.

Our society and our government will quickly feel the pain of caring for these generations of autistic individuals - many of whom could be recovered like my son, with proper services and information - when these kids are 18 and 65 and require government support.

Autism is our generation's polio, our country's malaria - we will find answers, cures, prevention if there is research.

I'm not a doctor and I've never written a letter to my government before - I'm a mom who doesn't understand what happened to my son and why. And now, through my own research to learn what I can do - I've met thousands of families like me and my heart is ripped open and my own pain compounds every day when I think about our collective request - Why are our kids sick? Why doesn't my doctor know? Why doesn't my government do something?

Please be the change that we need!

Thank you for reading my letter.

Ellie Johnson
Mom to Grady - diagnosed with autism at 2 and on the road to his recovery
Raleigh, NC

[Erik Nanstiel]

The "Autism Czar" could be a very good thing... or a very, very bad thing... Imagine someone like Paul Offit... or even Alison Singer. Our community would never get anywhere in the advancement of biomedical. We need open-minded, independent, research-oriented people on our side.

[Jeanne]

Done!

[John Kirton]

I say give us the "Autism Czar" that the President promised last year during the campaign. It was authorized way back in 2005 with the Combating Autism Act. The President needs to get on this ASAP, out children are not getting any younger!

http://www.youtube.com/watch?v=Zrg2rJMUASA

[Kelli Ann Davis -- PART 3 -- THE WHITE HOUSE]

All,

We are having a conference call with Senator Durbin and Casey's staff tomorrow to discuss the current draft bill. In preparation for that call, we are asking the community to contact the White House Office of Public Liaison's via their website and share your personal intervention/treatment stories.

Tell them you support language that allows parents to make the best medical decisions for their children and you support GR/AAN/Illinois Biomedical Kids in making sure the best bill is introduced on behalf of your family/child.

Thanks so much and I’ll keep you posted on how it goes. I plan on calling the White House directly on Friday to make sure they are rec’ing our messages!!

Best,

Kelli