Thursday, August 23

Turf battle erupts in Vermont over autism fundraising walk

Last year, Autism Speaks organized its first fundraising walk in Burlington, Vermont. The walk attracted more than 400 participants and raised nearly $35,000. By many accounts the event was a success, however some parents began to question why they were raising money for national research when local families in Vermont needed immediate assistance.

As a result, one of last year's community sponsors - a group called Autism Support Daily - decided to organize their own walk and call it the Second Annual Vermont Walk on Saturday, September 29th. Rather than give up the event they helped organize - Autism Speaks is fighting back by organizing their own walk on Sunday, September 30th at the same park!

As a result of this dispute, it's likely both groups will only raise a fraction of what was raised last year. While both groups have maintained an amicable relationship in public - some of the messages in private message boards have expressed frustration and confusion.

In response to an email from this blog, Lynn George, the President of Autism Support Daily had this to say:

We appreciate that Autism Speaks raises money for much needed research, however, the families in our area are struggling and need as much support as we can provide for their children now.

While the total amount of money at stake in this "turf battle" is not major - it remains to be seen whether pressure from local groups will potentially erode the fundraising base for large national groups like Autism Speaks.

Autism Speaks was founded in February 2005 by Bob Wright, Vice Chairman of General Electric, and his wife Suzanne, to improve public awareness about autism and to promote autism research. In 2006 the organization merged with National Alliance for Autism Research (NAAR) and with Cure Autism Now, a 10-year-old organization based in Los Angeles that is primarily involved fund-raising for a variety of autism research.


Diane said...

Bravo for Support Autism Daily! While Autism Speaks has done a great job in making Autism a household word, they have done nothing for the communites they take money from. Its time to take the money out of the big business of AS and put into the hands of people who need the help. Autism United is doing the same thing, their first New York walk is next month, and I am proud to be affliated with them. Amazing that Autism Speaks is fighting for the money. But I do suppose they still have to pay their high rent and salaries. They need to take money out of communites nationwide to take care of their nice offices and hefty salaries. Go VERMONT!

Mark said...

Autism Speaks has done an excellent job of merging three relatively large organizations in order to streamline efficiencies and amplify its mission.

If AS put the investment dollars into getting the walk started and establishing the outreach last year - it seems like the local group is stealing the event.

miriam said...

It is sad to hear about this controversy. National advocacy groups serve one role; local service groups another. We need both to create change and provide necessary services. One can hardly blame a national advocacy group for doing the work at the core of its mission--which does trickle down to the community.
And perhaps people need to focus on the variety of ways to raise money. A walk seems to me to be an awareness event--more appropriate for the national advocacy group--while the local service group could raise money in more cost effective ways (since I don't think walks are very cost effective as fundraisers--but they do raise awareness).

a fundraiser said...

Excellent point Miriam!

Chuck said...

Autism Speaks, being the newest kid on the block when it comes to national autism charities, has sucked the financial contributions from many more established, more respected organizations or societies. Nor does AS have the monopoly on “walks” or “awareness campaigns”. These types of events have very little in the way of expenses, so they offer the highest return to the charity/organization.

Both Charities should spell out exactly where the money raised is going and how that money helps the people in the local community. Given that information, both participants and contributors will be able to best determine where to put their resources for the outcomes that they desire.

Anonymous said...

We would do well to follow the law of Vegas (what happens here, stays here) and adopt the following for Walks in any state:

Money raised by parents of children with autism in that state, should STAY IN THAT STATE!

To benefit programs for autism that serve families/individuals in that state, and to provide grant money for the non-profit organizations within that state that serve families of children with autism.

Dad said...

AS has raised millions, with their stated goal being a billion. What we have seen so far has been very nice 6 figure salaries for key officers, very nice digs in Manhattan with the more than pricey rent, flying entertainers back and forth to various functions, and oh yes, some funds for research with the lion's share going to the good buddies of the officers and a few crumbs tossed to the rest for good measure.

The majority of the money raised by AS has gone to strict genetic research, which will inevitably give us the same result that we saw with the genetic research into Down Syndrome - a 90% reduction in incidence through couselled, elective surgery.

The local group is 100% right that we need more money put into providing services for those here now. I hope the people in Vermont clearly see the writing on the wall and funnel their donations accordingly.

A grantwriter said...

I am the parent of a 7 year old with autism and as a grantwriter have worked at NFP's at local, state and national levels for the past 15 years. While I wince a bit at the idea of the local organization being brazen enough to call their walk the 2nd Annual Walk, I do feel that Autism Speaks has become the Wal-Mart of non-profits. They have a reputation of not playing well with others. Not only are they cutting into local fundraising dollars for autism, but they are impacting other national organizations that are more contientious with how they spend their donors' dollars. Anyone who thinks that by merging with other large autism organizations, AS has become efficient,needs to look at their 990 form. I can think of better ways to spend the million dollars they spent on their hardly impressive website.

Katie Wright, daughter of the founders and parent to Christian (the reason the Wrights' founded AS), has joined the board of two other national autism organization boards (with modest budgets), which align more with her perspective of autism.

Peter said...

Bravo diane, very well said!

Just noticed the poll as well, 40% believe that AS should cancel walk. I guess the people are speaking.

? for fundraiser:

Have you spoken with anyone else involved in the walks? Your posts seem very one sided!

a fundraiser said...

One sided? I think the story and the nine comments written by readers have represented BOTH sides of this debate.

Gregg said...

We are a local Colorado non-profit trying to help families here with Autism. We are opening the first assisted living facility in the state catering to Adults with Autism possesing IQ's over 70. We are trying hard to get folks to realize things that this begin at the grassroots level, that Autism Speaks has done a good job of "marketing" Autism, however local charities need more support since they cannot draw on "star power". We do have some Hollywood folks wanting to help, so we are trying to make some inroads!

Gregg said...

We are a local Colorado non-profit trying to help families here with Autism. We are opening the first assisted living facility in the state catering to Adults with Autism possesing IQ's over 70. We are trying hard to get folks to realize things that this begin at the grassroots level, that Autism Speaks has done a good job of "marketing" Autism, however local charities need more support since they cannot draw on "star power". We do have some Hollywood folks wanting to help, so we are trying to make some inroads!

Robin Nemeth said...

I attended an Autism Speaks benefit concert at the House of Blues in Cleveland last spring. I didn't buy tickets, but instead stood outside politely asking people coming in to the venue if they would like some information about mercury in vaccines, and autism. If they said yes I handed them a flyer similar to this one

If they said no I let them pass. I was told by the women inside of the lobby, the organizers of the event, that I would have to leave. When I refused, as I felt that I was within my rights to be on a public sidewalk, they told me that I would be arrested. They called the police and two police cars arrived and I was asked to leave by the officers, and then the chief of police eventually was called out, and he told me that I could stay so long as I was not obstructing or harassing anyone. I didn’t need to be told not to harass or obstruct anyone.

Someone outside of the House of Blues that night asked me to leave, because, she said, “we worked very hard for this, and you are spoiling our evening.”

Later on, in a local newsgroup forum, Ms. Goldberg, local Cleveland chapter president of Autism Speaks, denied publicly that an arrest attempt was made that night. After witnessing first this bullying and then the lies about it, and then, a few months later, witnessing her organization raise over half a million dollars for a Cleveland Autism Speaks walkathon, I felt compelled to obtain the copy of the incident report of the arrest attempt

This woman continues, to this day, to deny what happened. What sort of dishonest uses will money raised in such dishonest ways go toward? They have so much money and so much power that she continues to lie about this publicly on AutismNE, where I am denied the opportunity to clear my name, because, I am told by the forum moderator, “we only want positive comments.” The moderator there may call what she and Ms. Goldberg are doing ‘positive’. I call it lying, and I call it evil. The people who are raising huge sums of money in order to fund more studies on genetic causes are nothing but thugs who work to protect the industry that’s poisoned a generation of our children (they are still poisoning people with the thimerosal and other poisons in their flu shots), and the people who support them, all in the name of ‘helping autistic children and families with children on the spectrum’, are no better.

radhika said...

This site is to know that some gossips created by some one should not be told to the donor.Turf battle in Vermont collects some huge amount by their fun raising walk.

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