Home > Co-founders, Science > Wrights Attend DAN! Conference

Wrights Attend DAN! Conference

From left, Bob Wright, Stephen Walker, Ph.D., assistant professor at Wake Forest Institute for Regenerative Medicine, Arthur Krigsman, M.D., assistant professor of Pediatrics at NYU School of Medicine, Katie Wright, Suzanne Wright, Andrew Levinson, M.D.

Read posts about the DAN! conference from Pat Kemp of Autism Speaks, Dr. Alessio Fasano, M.D., Dr. Simon G. Gregory, Ph.D., and Dr. Judy Van de Water, Ph.D.

  1. Sarah
    April 16, 2010 at 12:23 pm

    Thank you so much for attending a DAN! Conference.

    It is very important (to me) that Autism Speaks has it’s eyes and ears on all facets of our community. We are such a diverse group – from the 100% genetic, to the neurodiversity movement, to the drug my child now crew, to the mito/fod crew, to my child has been damaged by toxins (of all sorts) crew, to the many, many flavors of ABA/VB/SonRise/RDI/Greenspan, etc., etc.

    It really means so much to me that you are reaching out and listening to everyone.

  2. LeeAnn Winebrenner
    April 16, 2010 at 5:16 pm

    My son’s DAN! dr. was of little help to the both of us. He didn’t want to help, rather, run expensive tests, throw my son into a program for experimental drugs on ASD kids, and change his diet. We tried the diet change, and…nothing. His behavior didn’t change in the slightest, except that he was miserable because he couldn’t eat what he called real food. I don’t believe there is a magical pill that is going to fix autism. You just need to get through to them.

  3. Katie Wright
    April 16, 2010 at 8:53 pm

    LeeAnn, I too tried many DAN! interventions that did not work for my child. It is incredibly frustrating. I also had Christian try many mainstream interventions that not only did not work, but made him significantly worse!

    That is why we desperately need more clinical research. You are right there is no magic pill but many DAN! interventions really do help kids and that is great. Some kids are also helped by Risperdal. You are right, there is no magic pill.

    I think my parents went to DAN! to learn as much as possible from all the families in the community. They also go to IMFAR and other conferences.

    Thanks to our DAN! doctor, one of the craziest interventions, the TSO, ended up really helping Christian’s GI problems. We never know what is going to work so we just keep trying. I hope you find an intervention that really helps your son.

  4. Sarah
    April 16, 2010 at 9:47 pm

    Well – my son literally wouldn’t walk up the street more than one house. After starting supplements – he was running, I mean it, running (not to mention the improvement in his ASD symptoms)… Is he recovered? No. If we had started sooner (meaning before joint attention is formed – 8-12m or whatever they are saying now – is it 5-15m? who knows) – who knows where he would be.

    But, LeeAnn – you touched on something – nothing is that simple. I really truly believe all of our kids are very, very different – and the saying “if you know one kid with autism, you know one kid with autism” is true. I totally agree there isn’t a magic pill to fix autism – as certainly, there isn’t such thing as one “autism.”

    That is why I LOVE Autism Speaks so much – all their initiatives to catalog, document, run tests to normalize different interventions – e.g., the ATN or the initiative to identify the different phenome subtypes (and tragectories) – check out UC Davis MIND Institute Autism Phenome Project (APP).

    http://www.ucdmc.ucdavis.edu/mindinstitute/research/app/index.html

    If Autism Speaks doesn’t have a hand in financing the APP – they should. Actually, it is illogical that they don’t, as we just heard today on e-speaks about the expansion of the EARLI project – and UC Davis is now an EARLI site. The EARLI project is beyond cool.

    http://www.earlistudy.org/Research-Sites/18/

    I was just at a conference (mainstream ATN docs) where they said they think there are at least 20-30 different autism subtypes based on biomedical and behavioral characteristics (I wish they wouldn’t look at behavioral – that is a fool’s goose chase – but, hey, I’m not in charge – sadly, the psychiatrists are – and they’ll never let go).

    I just hope that the ATN types learn from the DAN! types – to run tests based on symptoms – and then worry about genetics. I fear that the ATN is doing it in reverse – looking for genetics, then running biomedical testing.

  5. Dadvocate
    April 18, 2010 at 2:01 pm

    Although my child isn’t under the care of a DAN physician and I have some deep reservations about how some of them seem to have a one size fits all approach administered by assistants, rather than the physician personally seeing and caring for the patient, I applaud Autism Speaks reaching out to people affiliated with the various DAN approaches. Frankly, many of the DAN protocols seem based on common sense dietary interventions that can work for many, whether on the spectrum or neurotypical.

    I am especially pleased that the Wright family came together for this conference to seriously study these approaches, which have recently been the subject of highly questionable stories in the media (mainly the Chicago Tribune) that seem rooted in agendas other than advancing understanding of autism spectrum disorders and developing therapies and supports to help children and adults on the spectrum.

  6. Katie Wright
    April 19, 2010 at 2:31 pm

    Thank you “Dadavocate.” You are right, it is important that AS reach out to all communities. DAN! is really important because it is parent driven. Families go, not because they have a lot of free time and money, but because they are helped by attending- whether by networking w/ other parents of sick kids or attending Q and As w/ doctors and asking pertinent questions their pediatrician cannot help them with. I agree that a good DAN doctor is not a 1 size fit all clinician. I believe my parents were impressed by the conference doctors’ breadth of knowledge in treating the complex kids. No one has all the answers but “here and now” is the DAN! focus.

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