AUTISM SPEAKS SNEAKS INTO CLEVELAND

This letter was sent last week. It describes the dirty pool played by Autism Speaks.  For the second time that we know of this year, Autism Speaks has tried to pull money and manpower out of a local autism charity by scheduling an event to coincide with a local event.  Who has more advertising/publicity power? The local guys and gals or the monster Charity whose board member Andrew Robertson is the head of one of the worlds largest advertising agencies (BBDO) and whose founder used to run a national television network? Check that one out HERE.

Does it anger you as much as it does us to see local dollars flowing to Park Avenue, New York and never reaching a family with a real, live autistic child? Even Cleveland and Pittsburgh can set aside their rivalry when it comes to our kids. The folks at Autism Link in Pittsburgh offered to share proceeds with a NE Ohio autism group from T-shirt sales.  You can order your very own "Nobody 'speaks' for me" T-shirt right HERE. Wear it as you sit on the sidelines at the next "Walk Far so our staff can buy a shiny new car" in your city.

Of course, Pittsburgh is having the wool pulled over its eyes by AS right now too, as AS petitions to avoid parking fees at its latest and greatest event in Steel city.  It's a shame Autism Speaks prefers to stomp on the local folks than provide tangible help to local families.

Dear Friends of Northeast Ohio Autism Group,

We have recently learned that Autism Speaks has scheduled an event for
autism almost identical to ours and near the same time. We would like
to clarify some information with all of you so there is no confusion.

Cleveland Rocks Autism was developed by board members of Northeast
Ohio Autism Group. We chose to donate the proceeds from this event to
Autism Speaks, a national organization, but asked that they keep part
of the funds local to the Cleveland area. We knew that keeping funds
local were just as important to our donors as it was to us. Autism
Speaks informed us of the Autism Treatment Network in Cleveland and
verbally specified that ! they would donate a portion of proceeds to
them -- and we truste d this. After repeated, unsuccessful attempts to
find how much money actually stayed local, we have found that there is
no Autism Treatment Network in Cleveland after all, and has not been
for quite some time.

In lieu of this, and the overwhelming need for more help on a local
level, the founding members of Cleveland Rocks Autism developed
Northeast Ohio Autism Group. We can guarantee you, without a doubt,
that all proceeds from our fundraising events will stay local to our
own communities. NEOAG's fundraising event for 2008 has been named
"Rock The Puzzle" in order to start new, so there is no confusion that
it is, indeed, a local event. We are an approved 501(c)(3) charity, so
all donations will be tax-deductible.

Please be educated on where your donation will go, no matter who you
choose to donate to. NEOAG agrees with Autism Speaks' ongoing
dedication to research, ! but does not agree with the desire to compete
with others for the same cause. We simply feel that monies raised
locally should stay local. We also hope that Autism Speaks will decide
to give back to the Cleveland community, which has been so supportive
of them, with proceeds from their upcoming event.

We hope this has clarified any confusion and if you have any
questions, please contact us -- we are wide open.
Thank you for your support and Happy Holidays!

NORTHEAST OHIO AUTISM GROUP
Marianne Seaman, Cindy Lindberg, Kathy Pahr, Wendy Bergant, Gabrielle
Osborne

www.northeastohioautismgroup.org
www.rockthepuzzle.com
www.clevelandrocksautism.com
440.488.3473

Comments

[Valentine21Shari]

Some time before, I really needed to buy a house for my business but I did not earn enough cash and could not order something. Thank heaven my fellow adviced to get the mortgage loans at trustworthy creditors. Hence, I acted that and was happy with my collateral loan.

[Kelli Ann Davis]

Hey Michael,

As you can see by my comments, I figured there were two sides to this story and I think I got that message across to the readers.

I see your wife Shari is one of the key local folks running the AS fundraiser.

Have your friends requested that their names be removed from the other group’s website?

If so, that seems pretty “underhanded” to me for them to continue to post their names as "sponsors" when they know the donations were meant for the AS group!

What I find interesting is that Local Wine Lover and Beachwood Mom (who had negative comments about your group) didn’t post their real names – whereas, you did.

Personally, that speaks volumes to me.

Kelli

[Michael Goldberg]

Ok. Now for the truth. Last year's Cleveland Rocks Autism event was a partnership between CAN/AS and local activists. Everybody knew where the money was going before the event and some of the funds did go to local research. However, due to some failures on the national level to share information with the people who are now known as the Northeast Ohio Autism Group, those people opted out of the joint venture and planned their own event. That event was set during national autism awareness month but also during the Passover holiday. The Autism Speaks Cleveland chapter prsident and many others involved with the program this year had conflicts with all other available dates in April. This was the weekend chosen. There are many great events happening throught Autism Awarenes Month which are not competing with each other but rather raising awareness and funds. The Autism Speaks website does give details about the local use of funds. So it is completely inaccurate to say the funds are not helping local families. Anyone that doubts Autism Speaks' contribution to the war on autism please check the facts. There was no attempt to compete with the NOAG event and I personally wish them well. However, if fingers are to be pointed, that group has accepted donations made in error by my friends who thought they were supporting Autism Speaks and "ROCK Til it Stops" and who, when requesting a refund, were told "too bad" and whose names were posted as sponsors on the NOAG event website. So a lot of the information that I see on this blog is inaccurate and its all unproductive towards or joint goal. I'm sure both sides could write a book about this rift but who is that helping?

[Kelli Ann Davis]

Local Wine Lover and Beachwood Mom:

What’s confusing and I think a bit misleading in all of this is the fact that one group can lay claim to an event that obviously had input from MULTIPLE individuals within the LOCAL community.

That’s the point I was trying to make.

When you look at the names of the individuals who are working on the AS fundraiser @ 50% of the names on the list are LOCAL individuals who also appear on the INITIAL fundraiser from last year. In other words, they were obviously involved in some capacity with the original idea (fundraiser) so how can they be “accused” of stealing an idea that they helped develop and/or contribute to?

Whether they belong to a local autism organization has no bearing on whether they have any “claims” to the original idea.

For instance, I’ve always been involved on the NATIONAL front in regards to our issue. I’ve NEVER belonged to a local organization. So what if I decide to work alongside other local individuals (some who belong to a local organization and some who don’t) to promote a fundraiser and we all work equally hard on it. Does it “belong” to any one person or group? Of course not. It a collective effort.

Obviously, there has been a “parting of ways” between the LOCAL individuals who put on the first fundraiser. And it’s obvious both “camps” want to continue the initial fundraising idea of the Rock and Roll theme. And it seems that each camp is going forward with their separate events. So, what’s the problem?

Nothing – except when one camp is intent on trying to “discredit” the other side by presenting misleading information.

That’s the problem.

Bottom Line: There are ALWAYS two sides to a story.

I will applaud the day when we can stop fighting among ourselves and instead learn to support each other.

[Local Wine Lover]

Actually, since I am a wine lover and an educator I followed the event closely last year and offered my services that evening. It originated from a local winery producing two wines in which part of the sales were donated to help children affected by autism. All the press releases clearly stated that last year. Cleveland Rocks Autism was a party to release these two wines to the public. This same winery is creating two new wines for 2008 and will be releasing them at "Rock the Puzzle" at the House of Blues on April 26th, 2008. Instead of the money going to CAN/AS this year it will go to Northeast Ohio Autism Group in order to keep the money local to the community.

It is ridiculous that CAN/AS has put together an almost identical event to compete with this original event. Since CAN/AS lied about the research center being in Cleveland you would think they would want nothing to do with having an event here or would do the right thing and step aside and allow Northeast Ohio Autism Group to have the event they worked hard to create in 2007. In fact, it would make more sense to have an event in a town in which they actually do bring some of the money back-like in Cincinnatti where they do have a research center.

Anyway, I am looking forward to the release of the new wines and I hope CAN/AS decides to do the right thing (although highly unlikely I am afraid.)

Cheers!

[Beachwood Mom]

I was also at Cleveland Rocks Autism and also volunteered. The reason you saw Autism Speaks' name attached to the event is because, obviously, that is who the money was being raised for.

There is an overlap of donor names because AS is attempting to claim the event as their own. If you did your search for a website, you would find that www.clevelandrocksautism.com lives right in Cleveland. That kind of speaks for itself.

The truth is, AS is capable of holding any event that they want, but chose to hold an almost identical one at the same time to compete with Cleveland instead of doing their own thing. It really shows their character.

I hope that Rock The Puzzle is a huge success and I would be proud to help again.

[Dadvocate]

The fundamental issue is that Autism Speaks primary mission (in spite of today's Family Services Grant awards) is finding effective treatments and cures. That is a non geographic specific mandate. There should be an effective national advocacy group for support, which is geographically focused. ASA should be it but their chapter model is structurally flawed and ineffective as are many other small local groups. Basically support advocacy has no scale. Until AS adopts support as a main mission or ASA (or a new organization) becomes an effective fundraiser and advocate for local and national support services, these conflicts will continue. I personally prefer to see ASA restructure and narrow it's mission to lifespan support advocacy and implementation but I'm not holding my breath.

[Robin Nemeth]

I was at the Cleveland Rocks Autism benefit concert. It was held at the House of Blues in Cleveland on the night of April 21. I was under the impression that it was sponsored by Cure Autism Now and Autism Speaks. I don't know where I got THAT information, but I know that I didn't just make it up. I saw it either on a website or some newspaper advertisement. Probably on a website. Why would they have been promoting the event as an Autism Speaks event last spring, when there are people who are now claiming that THEIR organization (Northeast Ohio Autism Group)sponsored the event, and then gave the money they raised to AS because of a verbal agreement?

Somebody once said "follow the money". I sure wish I knew how to do that.

There's something damn fishy going on with these organizations and the people who run them.

[Kelli Ann Davis]

Seems like a classic case of the Hatfields vs the McCoys to me.

If you do a scan of donors for the 2007 “Cleveland Rocks Autism” event and a scan of the individuals on the Chair/Host & Planning Committees for the 2008 Autism Speaks “Rock ‘Til It Stops” event you’ll see about a 50% overlap of names.

To answer your question: the unproductive in-fighting within the community is what I personally have little tolerance for these days.