Raising money for autism research

Every fall, my family participates in a fund-raising walk to support autism research. My seven year old son Jay is severely autistic and unable to talk. When we tell people he can’t talk, they often assume that he must still understand things fairly well, but this is not the case. Sometimes I want to explain that Jay has no language, but this is a hard concept to get across quickly. In a practical sense, it means Jay is profoundly apart from the rest of us, and likely always will be. The good news is that, as far as we can tell, Jay doesn’t suffer any mental anguish as a result of his separation. He’s generally a pretty happy kid. His parents had to mourn the passing of the child they thought Jay was. This caused real pain, but crucially this child that did pass away wasn’t Jay. He was a fiction, a projection of the hope that imagines the future can be predicted. When you look into a child’s eyes, what do you see? It’s hard to see the child, so often cloaked by heavy layers of expectation and projection. That is one gift Jay has given me: I have learned the importance of seeing Jay when I look at Jay. It’s a hard lesson to learn.

Dealing with Jay has taught me many valuable lessons, but all the same, I’d rather that you never have to confront autism in your own family. Unless we can understand more about how and why autism happens, there is the increasing and disturbing possibility that you will encounter it in your extended family some day. Research is the only way forward, and research costs money. That’s why I’m asking for your support. Go to the “Walk for Autism” web site and pledge some money for our walk. I’ll thank you right now for doing it.

I am also including below my wife’s annual fund-raising letter.

Dear Family and Friends,

Every 20 minutes, a new child is diagnosed with autism . . .

Another fall has rolled around, and here I am, asking for money for
autism research again! The 2006 Greater Boston Walk for Autism
Research will take place on October 15th, and I’m hoping you can help
by either making a donation or joining our team of walkers.

Last year’s letter was a bit of a downer, so let me report some
encouraging news this year. First, Jay has made some good progress
since he started his current school in May 2005. He is matching
colors, shapes, numbers, letters, and even words! He is nodding and
pointing well to request what he wants, and is fairly reliable at
waving and greeting people if greeted first. At the dinner table at a
recent family vacation in New Hampshire, Jay impressed his
relatives with his vigorous “yeah” and purposeful nodding when asked if he wanted a
favorite food.

I also want to report encouraging news from beyond our family. Since
2001, this fundraising walk, and many others across the country, have
been called the “Walk Far for NAAR”. But in February 2006, NAAR and a
new organization called Autism Speaks decided to combine efforts, with
the name “Autism Speaks”, in order to have one strong voice in the
fight against autism. The Walk is now called simply the “Walk for
Autism Research”, and as always, the money raised will go directly to
fund high quality autism research. (To read about research projects
recently funded by Autism Speaks, go to
But you might be interested to know that Autism Speaks is also making
a big impact in raising awareness about autism and advocating for the
needs of families affected by autism. For example, in April they won a
coveted three-year public service advertising campaign by the Ad
Council. The first round of commercials is already airing, with the
message that 1 in 166 children are now being diagnosed with autism.
Autism Speaks was founded by Suzanne and Bob Wright, grandparents of a
5-year-old boy with autism. Bob Wright is chairman and CEO of NBC, so
media access for this cause is now greatly enhanced. And in just 18
months, Suzanne Wright’s strong, passionate voice has been making a
difference on Capitol Hill and all over the country.

So the organization behind the Walk has changed, but the cause and the
urgent need remains the same. Please open your hearts (and wallets!)
once again to contribute to cutting-edge, important research into the
causes, preventions, and treatments, and ultimately a cure for autism.
Our goal for Jay’s Team this year is to raise $10,000. You can
contribute online at:


Or you can mail a check payable to “Autism Speaks” to Wendy Gulley, 11
Belknap Terrace, Watertown, MA 02472. Contributions are

Thank you so much for your help. Together we will find a cure for
autism, and put this disorder in the history books.

Wendy Gulley

3 thoughts on “Raising money for autism research”

  1. cute picture of jay.. think they did well in Charlotte..love to you all,
    Maybe we can see you at Christmas.. Margaret.. ( the elder and I know in my heart the favorite)

  2. Hi Ned,

    My name is Keri, I am Greg’s sister. In reading your blog I was saddened to read about your son. When did your son start to develop signs of autism? I am sure that you and your wife have done alot of research on this awful disease, but I was wondering if you ever looked into the fact that his illness could be yeast related. I currently have been diagnosed with Candida, and through my own research I have come up with yeast related illnesses to Autism. I don’t know if you have ever heard of Candida, but it is an immune system disorder that was caused by to many antibiotics, poor eating habits, And a nail fungal infection that was never properly treated. The doctors gave me an antibiotic for it when they should have given me an antifungal to kill the yeast off in my body. As you may already know when you are given an antibiotic, not only does it kill off the bad bacteria but it also kills of the good bacteria in your gut. If you don’t replace the good bacteria then your body will start to get sick. When you add in an unhealthy diet into the mix, the yeast begin to feed on the sugar that you have eaten and thus creates toxins in your body that can create all sorts of symptoms including brain fog, inability to think straight, digestive disorders, anxiety, depression, and the list goes on. When your son was a baby was he ever on alot of antibiotics? I will enclose a website that talks a little more about this subject. I am not a doctor, but am just someone trying to help, because I know what it is like to be dealing with an illness that nobody can give you any answers to especially doctors. In my own experience I went through many tests that all revealed nothing. The doctors all told me I was fine when I knew I wasn’t. I wish you and your family all the best luck. Please let me know what you think, I would love to talk more to you if you are willing. Best regards, Keri http://www.parentsofallergicchildren.org/autism_@yeast.htm

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