Re: On Autism Speaks' Grants

[Guest guest]

BEAUUUUUUUUUUTIFUL! Thank you AGAIN !

--- Kim wrote:

> By

>

> People frequently ask me what I think of Autism

> Speaks and are surprised by my answer. I believe

> the creative team, the administrative staff, the

> incredibly hard working special event and Walk

> staffers are amazing. They all could be pursuing

> more lucrative careers elsewhere but truly want

> to help autistic kids and their families.

>

> My parents, Bob and Suzanne , are also

> tireless in their efforts to bring attention to

> the needs of our families. At a time when it

> seems as if the whole world, especially in the

> Middle East, is angry with the United States, my

> Mom has successfully engaged in a wonderful

> collaboration with the Sheika of Qatar in order

> to have the United Nations declare a World Autism

> Day. This is only the third time the U.N. has

> recognized a disease in such a way. Autism Speaks

> has, undoubtedly, lifted the shame and isolation

> so many families felt by forcing autism into many

> public forums in the media and government. Their

> work on insurance re-imburs ement is also

> extremely important to all our cash strapped

> families.

>

> It is Autism Speaks' scientific advisors that I

> find myself at great pains to understand.

>

> It appears as if they are wedded to the past and

> are non-responsive to what parents want and the

> immediate needs of our children. By any measure,

> autism is worse than ever and traditional

> research has yielded few breakthroughs for

> children living today. So many ASD children are

> living with horrible GI disease, seizures,

> serious immune deficiencies, pain induced

> self-abusive behavior…

>

> Meanwhile AS has funded eye gazing research on

> fruit flies, a study on the olfactory senses in

> worms, endless gene research, yet nothing

> relevant to the pain my child lives with on a

> daily basis. Parents have waited for three years

> in hopes of seeing real biomedical research. Of

> course there is a place for gene and brain

> research in autism, but not at the expense of

> toxicology, immunology, regression,

> gastrointestinal and vaccine safety research.

> Preservatives in children's vaccines such as:

> aluminum, ammonia, formaldehyde, mercury and

> human embryos have never been adequate ly

> researched or proven to be safe, nor has the

> CDC's extremely aggressive vaccination schedule.

> Everyday infants are injected with these

> preservatives, combination vaccines and live

> viruses. There is no more time to waste. We are

> in the midst of a catastrophe and must be

> unafraid in pursuit of answers.

>

> It appears as if AS grants are selected less as a

> result of the significance of a research proposal

> but more as a consequence of the financial

> resources of academic institutions to put forth

> in producing most professional and conservative

> grant applications. Instead of funding impactful,

> breakthrough science, millions of dollars are

> spent on researching the same safe subjects over

> and over again. Numerous exciting, innovative and

> progressive biomedical grants on GI disease,

> methylation pathways and toxicity, vaccinated and

> unvaccinated siblings have been repeatedly

> rejected due to ignorance and fear. It is past

> time for the scientific advisory boards to think

> outside the box and pursue the bold research

> parents want and our children desperately need.

>

> Trump's recent comments are wonderfully

> illustrative of how out of touch with reality the

> AS' SAC is. Mr. Trump is the parent of a young

> boy and is horrified by the recent explosion of

> autism. Mr. Trump stated that he believes the

> " massive " increase in vaccines for infants could

> account for autism's rising numbers. Mrs. Melania

> Trump has spoken openly about how she spaces out

> Barron's vaccinations. So while some SAC

> scientists still debate whether or not autism is

> actually increasing, why it one in 90 American

> boys in the spectrum does not equal an epidemic

> and pursue their lonely quest to find the " autism

> genes, " parents have moved on.

>

> Regarding the most recent grants for young

> investigators, I question the wisdom in investing

> such great financial resources in researchers new

> to the field while the grants of experienced DAN!

> physicians who work to recover kids every day are

> continually ignored. AS needs to invest in

> doctors who have been treating and recovering so

> many autistic children, not just in academics

> with the best team of professional grant writers.

> Hopefully, Autism Speaks' summertime clinical

> grants will reflect a broader, more biomedical

> and relevant approach to helping our children. In

> the meantime, I encourage parents to educate

> themselves about biomedical interventions via

> other websites, such as: NAA, SafeMinds, ARI,

> TACA, Generation Rescue, FAIR Media and

> Thoughtful House.

>

> I know that Autism Speaks is trying to change.

> There are some truly courageous voices on the

> SAC, but they are too few. I am, however,

> optimistic that Dr. Baskin's new

> environmental committee will green light some

> exciting research. I am also hopeful that Dr.

> Geraldine Dawson, AS' new Chief Scientific

> Officer, will be more proactive than her

> predecessor and champion the innovative

> environmental research families want to see

> funded.

>

> On another subject I want to thank Deirdre Imus

> for her wonderful essay in the Huffington Post

> about the New Jersey vaccine mandate. I feel

> heartbroken for the New Jersey parents who must

> choose between day care, school and more vaccines

> for their toddlers and school age children. Why

> mercury has not been removed from every flu

> vaccine simply defies comprehension. One would

> think that New Jersey, possibly the autism

> capital in the country, would approach vaccine

> mandates with great caution. One in 60 New Jersey

> boys is on the autist ic spectrum and the vast

> majority of parents believe that vaccines played

> a role in triggering the disorder in their

> children.

>

> It is astounding that the American Academy of

> Pediatrics yet again, ignores parents' concerns

> and testifies, again, in favor of the adding even

> more vaccines to the overcrowded schedule.

> Exemptions will be almost impossible to procure.

> Parents with one ASD child are now placed in the

> horrible position of having to over-vaccinate

> younger siblings, despite their well-founded

> concerns about the impact of so many live

> viruses, dangerous preservatives and combination

> vaccines on a developing brain.

>

> It is time for the researchers, politicians and

> the AAP to stop listening only to each other and

> start listening to the families of autistic kids.

>

> has two young boys. Her oldest son,

> Christian, is severely affected by autism. He

> developed normally; smiling, talking, walking;

> only to lose every skill and every word by the

> age of 2 and a half. Upon the advice of medical

> professionals and her husband were advised

> to pursue only high quality behavioral therapy,

> speech and OT for Christian. It had no meaningful

> impact on Christian until his parents sought help

> from DAN! doctors who treated the underlying

> causes of Christian's descent into autism.

> Christian has improved but still has far to go.

> He has Inflammatory Bowel Disease, the measles

> virus in his gut and an immune system akin to a

> late stage AIDS patient. Christian does not have

> a psychiatric disorder. Before autism,

> was the Clinical Director of Sexual

> Assault Crisis Center in Stamfo rd Connecticut.

> is proud to serve on the Boards of NAA and

> SafeMinds.

>

>

>

>

>

>

>

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