Ali Edwards Capture life. Create art.

April 5, 2007

Interactive Autism Network

From: HealthDay
Robert Preidt
Tuesday, April 3, 2007

TUESDAY, April 3 (HealthDay News) — Experts say they've launched the first U.S. national online autism registry.

The Interactive Autism Network (IAN), which began on Monday, will link parents of children with autism with researchers in an effort to learn more about the causes, treatments and possible cures for autism.

The network will collect valuable genealogical, environmental and treatment data from parents and will inform parents about local and national research studies. Many autism studies cannot be completed because researchers aren't able to enroll enough qualified participants.

"Parents are looking for a more direct way to get involved and speed up autism research, hoping for effective treatments and eventually a cure," Dr. Paul Law, director of IAN, said in a prepared statement. "IAN will fill that research gap for parents and researchers, transforming the face of autism research as we know it."

The network's data collection and management processes are designed to ensure privacy.

"By linking parents and researchers, the IAN project aims to organize and mobilize autism research efforts in hopes of achieving results similar to the leukemia community," Dr. Gary Goldstein, president and CEO of the Kennedy Krieger Institute, which launched the network, said in a prepared statement.

"Thirty years ago, the majority of children with leukemia died. Today, the majority survive, because increased participation by a very organized research community led to discoveries of new and better treatments," Goldstein said.



There was a story about this on NPR this morning and then my friend Marianne sent me a follow-up as well – thanks for the reminder that I wanted to check this out.

This is so cool.

A place for people to come together, share information & experiences, plus give & get support. A way to link parents and researchers. It looks like there is tons of interesting stuff on there…always thirsty for more information.

Comments

  • 1.
    Kim said…

    That is awesome information. Glad you’re sharing this info with those in need.

  • 2.
    Erin said…

    Thanks for the information, Ali. Happy Easter!

  • 3.
    Kim said…

    You may know about this, but today’s Oprah subject is autism. I thought that you might want to check it out.

  • 4.
    Queen Mary said…

    OK, weirdness alert. Long-ish story kinda. I work for one of the “big four” accounting firms. Every year our firm devotes one day to international community service: we all take the day and do community service — all over the globe! It’s very cool. So of course I sign up. This year I was assigned to the local autism center! It’s weird because the center is in MD, I live in VA, work in DC, so I have no idea how they drew my name for this assignment. I’ll be doing manual labor (nice change of pace for a tax lawyer), and I’ll be thinking of you!
    Community Services for Autistic Adults and Children is a private, non-profit agency dedicated to serving children and adults living with autism by helping them succeed in day-to-day activities and become active members of their community. Today CSAAC enables the individuals it serves to achieve their highest potential and contribute as confident members in their communities. CSAAC serves approximately 350 individuals, operates 52 homes, three school sites, and has expanded its services to include children as well as adults, making it the only provider in the state of Maryland with a comprehensive program for individuals from early childhood through retirement. It is a nationally-recognized leader in developing state-of-the-art services for people with autism and serves as a model for other agencies developing community based housing, employment, and other related services.

  • 5.
    Laurie said…

    That is awesome. It’s about time they utilized technology to start putting the people together so they can help put the pieces of this puzzle together.
    Great News!

  • 6.
    cynthia said…

    that is awesome !
    i’m watching oprah now and thought of you guys !

  • 7.
    gloriarose said…

    I just saw that Oprah is doing a show on autism today.
    ~G

  • 8.
    Pam said…

    Thank you so much for the link.. We are having a not so good day with my Aspergers son.. I am definitley going to check out the site.. Waah.. I missed Oprah today.. I wonder if they will show some of it on the Oprah website..

  • 9.
    Carol said…

    The Oprah show was very moving, very inspiring. The people on the show were all included in a documentary produced by Autism Speaks. I looked on the Autism Speaks website, but I don’t see a link to the documentary yet. The Oprah site has clips from today’s show.
    http://www.oprah.com

  • 10.
    Sue said…

    I think the idea of gathering and processing all of this information should be beneficial for all concerned.
    Sue

  • 11.
    suetreiber said…

    cool beans, Simon.
    now, how is he at matching his clothes?

  • 12.
    Cathy Walters said…

    Gosh Ali,
    I just saw half the Oprah show (before picking up the kids at school) …I don’t know how you do it…being a mom to Simon…and everything else you do. May God bless you richly. Much love and hugs…

  • 13.
    Catherine Katz said…

    Thanks for the link – just signed up. Meltdowns after dinner…what a way to make you want to connect!

  • 14.
    Amber said…

    Awesome news! What a great idea!

  • 15.
    Erin said…

    Hey Ali….just got a chance to watch today’s Oprah. Not a big Oprah fan, but I really apprectiated today’s topic. You are a wonderful person for being such a great mom to Simon. Keep it up!

  • 16.
    Laura Reaux said…

    Thanks for sharing that, Ali. Connecting… gosh, do I need to connect with other Moms who understand. Months into it the only diagnosis we have so far for Camden is SID. I feel like I don’t know yet if I can relate with parents of children on the spectrum, but I know parents of NT children can’t relate with me. Just waiting, and I will at least check out the site.

  • 17.
    CharlotteGoodluck said…

    Ali, Thanks for increasing my own knowledge about autism…your son is–so cute—I barely can get dressed somedays…it is funny—backward t-shirts and I am 60—so, life just takes time…wish you and your family all the joy you have for life. Charlotte

  • 18.
    CharlotteGoodluck said…

    Ali, Thanks for increasing my own knowledge about autism…your son is–so cute—I barely can get dressed somedays…it is funny—backward t-shirts and I am 60—so, life just takes time…wish you and your family all the joy you have for life. Charlotte

  • 19.
    madjoy said…

    We had a child with severe disabilities.
    She died 12 years ago during an operation…but I remember the feeling of being SO alone and looking for ANY connection I could find with anybody in any part of the world.
    I am SO happy for you that you have so many people to talk to & blog to via e-mail.
    I sometimes wonder if my world and our outcome would have been any different with this type of support and the “Great World of Blogging”.
    It’s easy to become stuck on that thought instead of welcoming the relief families must feel with ANY form of connection.
    I am so truly happy that your family has this support and the “information highway” connection.
    I firmly believe that the “family” you have developed on-line will help your family and expand your knowledge of what is available and I am SOOOO happy for you.
    Congratulations on that serious money on Six Degrees. May you rest well tonight knowing that your participation made such a viable difference! I am so very proud of you! -Amy

  • 20.
    Lisa Cohen said…

    My daughter has been diagnosed with SID (3+ years ago when she was ~2)… we thought that she was on the austism spectrum and there are some days that I still feel that she is. Each day is unpredictable and transitions are super tough although she is making great progress and now loves school. I love seeing parents and researchers connecting and hope that the advances and networks that are being formed for autism will bring some answers because it can be so frustrating to not know the causes and not be able to solve problems from that fundamental level. I’ll have to go see if I can watch the Oprah show that everyone is referring to. I’m sure it’s in one of the Tivo suggestions. Off to go check.

  • 21.
    Stephanie said…

    Ali — Just wanted to let you know that Friday, April 6th, segment of The View is on Autism and Autism Speaks.
    Stephanie

  • 22.
    Mary said…

    thanks for sharing this. We are definately planning to get Madison registered…
    xoxo
    M

  • 23.
    Lisa said…

    I just watched the rerun of “The View”‘s special on autism and just wanted to tell you that I am thinking of you and all the parents out their whose children have autism. I am not personally affected, but feel the need to reach out. Thank you Ali for making me aware of the epidemic. With all the resources you have listed here, I am planning on doing something starting with my donation to Autism Speaks.

  • 24.
    Debbie said…

    I also just saw the segment of “The View”. Normally I don’t watch it for other reasons that I won’t go into. But I did today. It was great to hear the stories.
    Happy Easter!

  • 25.
    Catherine Katz said…

    Just rereading comments – I have a child on the spectrum and a child with SID. Somethings are incredibly similar, but some are way apart. I’m still trying to figure the SID/SPD thing out – since it has been a whopping 3 weeks since we got that one! So, research away!!

  • 26.
    Erin said…

    Have you seen this?
    http://www.whatkindofworlddoyouwant.com/videos/view/id/213154
    Five for Fighting video featuring children with autism and Autism Speaks

  • 27.
    Sharron said…

    Ali
    I’m an avid, avid fan of your SB stuff and I thank you.
    Quietly at home, I sit and read all this stuff re: ASD and, although my DH won’t necessarily agree/acknowledge our eldest twin DS’s behaviours etc, I particularly have found great solace and improvement in using the techniques used in the treatments for PDD.
    I’m a Mental Health Nurse as well and the info you’ve been able to lead me to has had a beneficial effect on, not only private, but my professional life.People now take me seriously when I talk about these things and how they impact on lives, not only of the ‘person-with-difficulties’.
    Thank you. As a fan, a mum and a nurse. Thank you.

  • 28.
    Amoore said…

    HUGE VICTORY!! So glad to read this. I worked for 3 year as a speech therapist in the public schools and so often parents would ask about just this sort of thing. I’d give them names of other professionals, other parents of children, univ. in the area with depts. that might help, local/ state orgs. that might help but always with a sigh would shake my head about the sort of list they craved. SO HAPPY to hear that is finally getting done. Congratulations to you and other parents. What a huge step forward.

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  • 31.
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    I like your post about Interactive Autism I find very important to have knowledge of that.Brian N. Giddens

  • 32.

    I needed to know more about this sick to understand a my cousin and can understand his situation.

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