Aspies For Freedom

Autism Speaks and the National Alliance for Autism Research (NAAR) Complete Merger
2/13/2006 9:00:00 AM EST

Unanimous Votes by Both Boards of Directors Combine Two of the Leading Research and Advocacy Organizations in the Fight Against the Nation's Fastest Growing Serious Developmental Disorder

Autism Speaks and the National Alliance for Autism Research (NAAR) have completed their merger, bringing together two of the leading organizations engaged in the battle against autism, it was announced today by Mark Roithmayr, president of Autism Speaks. A memorandum of understanding was first announced in the late fall. The directors of Autism Speaks and NAAR respectively voted unanimously to complete the transaction. The combined organization will be known as Autism Speaks.

The consolidation of the two charities is based on their joint commitment to accelerate and fund biomedical research into the causes, prevention, treatments and cure for autism spectrum disorders; to increase awareness of the nation's fastest growing developmental disorder; and to advocate for the needs of affected families. Autism spectrum disorders are diagnosed in one in 166 children, affecting four times as many boys as girls. The diagnosis has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

"The completion of this merger marks the tipping point in the autism community, bringing together the best science, collaborative minds and impassioned advocates," said Roithmayr. "A unified autism community is better prepared to ensure that the general public is aware and responsive to this national healthcare crisis."

"NAAR's goal has always been to encourage, fund, support and facilitate biomedical research related to autism, and that remains the primary goal of the newly combined organization," said Dr. Eric London, co-founder of NAAR and newly named Executive Board Member of Autism Speaks. "We are very confident that the merger will lead to more money being dedicated to the types of scientific projects NAAR has funded for the past 11 years." Autism Speaks will adopt NAAR's distinguished scientific advisory board and also its scientific advisory committee, the latter with Autism Speaks' Chief Scientific Advisor, Dr. Gary Goldstein, President of the Kennedy Krieger Institute at Johns Hopkins, serving as Chair.

NAAR board members Ann Gibbons, Adrian Jones and Dr. London will join the board of Autism Speaks. Dr. London will also join Autism Speaks' executive and scientific advisory committees. Dr. Emanuel DiCicco-Bloom, who was a member of NAAR's scientific advisory board, will become a member of the Autism Speaks board of directors in addition to serving on its scientific advisory committee. All of Autism Speaks' current board members will remain in place. Bob Wright will continue to serve as chairman of the board of Autism Speaks and Suzanne Wright will continue to serve as vice chair. Mark Roithmayr will remain as president of Autism Speaks. NAAR CEO Glenn Tringali will assume the newly created position of executive vice president.

Autism Speaks will maintain and expand NAAR's international Walk for Autism Research grassroots fundraising program and its international affiliates. Autism Speaks will continue to place a high priority on raising awareness of autism, as well as on raising funds and supporting research, including NAAR's Autism Tissue Program and all previously announced research programs.

Autism Speaks, Inc.

Autism Speaks was co-founded by Suzanne and Bob Wright in February, 2005 in response to the diagnosis of their grandson. Bob Wright is chairman and CEO of NBC Universal and is vice chairman and executive officer of General Electric. The organization's guiding principles have been to raise public awareness about autism and its devastating effects on individuals, families, and society, and to raise funds to support effective biomedical research in autism. Since its launch in February, 2005, Autism Speaks has raised more than $30 million.

National Alliance for Autism Research (NAAR)

Founded in 1994, NAAR was the first national nonprofit organization in the country dedicated to funding and accelerating biomedical research exclusively for autism spectrum disorders. In 1997, NAAR put biomedical research on the map when it awarded five grants, each totaling approximately $30,000, to pioneering autism researchers. To date, NAAR has committed almost $30 million to fund more than 270 autism research projects, fellowships and collaborative programs worldwide -- more than any other non-governmental organization. The research initially funded by NAAR has been leveraged into more than $64.5 million in autism research awards by the National Institutes of Health (NIH) and other governmental funding sources. NAAR's ongoing funding of pilot projects and collaborative research projects, as well as its advocacy for increased government funding, has made a dramatic impact on the autism research landscape in the United States, Canada and Europe.

Maybe Cure Autism Now should join them too, so they become a massive blob of curebiedom, it would make it easier to follow their movements then.

The two organizations combined will have a lot of financial power to influence and stage-manage media events.

They have the same power that they had separately, but now under one umbrella.

One big umbrella is an easier target than two.

Tis too  :smile:

Actually you make a good point.

So far, they have stolen the title 'autism community' for themselves, and we have to use  'autistic community' to differentiate.

In theory we could make a move to take back the name, reclaim it, and rebrand their community such as 'autism parents community' to make the distinction clear.

A distinction is actually vital, as we see things such as "autism community seeks a cure" and the general public thinks that WE are asking for a cure.

Should we do it?

well, I think it would be totally ignored - perhaps pathologised - "they're saying that because they can't help it, but one day, when we find a cure, we'll even be able to help people like them etc etc"

When forces and resources are small, it's usually best to concentrate them on attainable targets where success is more likely.

I think it IS attainable! Out of over 600,000 sites that come up for the words 'autistic culture', the new site we just made is now number 4, which is amazing.

People are picking up these phrases from the internet a lot, I dont think most parents of a child with autism sit at home and think they will call themselves the autism community. They discuss it in groups and online, and scheme such things.

This is how they come up with such powerful charities.
We have to use the skills that we have to come up with a force against the curebie ideals, and writing information online is one way we can do that as a group, and disseminate new ideas.

perhaps you're right, Amy.

The problem with that is, if its a title that they wont like, we will be having a losing battle, if its something that they can also find acceptable, whilst still showing clearly who they are, we will have a much better chance.

Parents of the newly diagnosed coming online will find the 'autism parents community' and accept that as it sounds, for example.
If we all use the same name on blogs, sites, posts, it will become accepted in the same way that 'NTs' has.

What is a good title that is acceptable to both sides, that makes it clear who is being spoken about, and that isnt too long so that its unmanageable?

Do you think that would be acceptable to them though?

If a newbie parent of a newly diagnosed child comes online they would be unlikely to know what neurotypical means.

Hmm.
Might there not be more resistance though, from people already firmly entrenched in the 'autism communuity'?

I remember those marchers in Washington who were billed as 'autism community protestors', they have been calculating in using the term, I believe.

I agree that 'autism parents community' is a more accurate term and would help to distinguish our groups from theirs.

Nothing is to be gained by alienating those protesters, though we may well  disagree with what they think they are doing at the moment.

When parents realize that there is no 'cure' now, nor likely to be one in the forseeable future, and that they are stuck with their autistic child for good or ill, some of them at least will come round to thinking of what might be best for a growing person in the circumstances now confronting their child, and so be won round to our point of view.

All these groups contain within them significant numbers of potential AFF supporters and sympathisers, and we would do better to try and win some of them over to our view than dismiss them all once and forever.

Yes.
Should we start to use the term autism parents community then, and reclaim autism community.
If we are clear with our use of the term, they should not be offended.