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  • #67

    FEAT BC Admin
    Keymaster

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  • #5771

    David Chan
    Member

    Hi everyone,
    Michelle Weis has quite a few new therapist names on her list. Contact her at 882-9196. The Therapist are spread out through most of the centers in greater Vancouver. Give her a call if you need more, or are looking for therapist

    Dave

    #5770

    David Chan
    Member

    Hi everyone,

    Michelle Weis just let me know that she has some
    new names on the Therapist list. If you would
    like a copy, contact her @ 882-91

    #5769

    Isaac
    Participant

    Passing on a piece from the FEAT Sacramento list…

    ***************************************************

    Diagnostic Breakthrough in Autism and Mental Retardation Reported

    [The introductory message, related questions and answers and study
    abstract is provided by David Pisani and Ellen Powell EPowell@modimes.org of
    the March of Dimes. This study was funded in part by the M.I.N.D.
    Institute. Thanks again to R. Rollens.]

    Today some exciting research findings on autism and mental retardation
    are being released by the California Birth Defects Monitoring Program
    (CBDMP) and the National Institutes of Health. Because of your interest in
    this issue, we want to share them with you right away.
    A successful pilot study conducted by Department of Health Services/
    California Birth Defects Monitoring Program (CBDMP) and the National
    Institutes of Health (NIH), with collaborators at the Department of
    Developmental Services and The M.I.N.D. Institute, provides an important
    clue for researchers looking for causes of and cures for these conditions.
    The abstract of this study is provided below. In brief, the study
    looked for biomarkers at birth in children with autism, mental retardation
    or cerebral palsy by analyzing newborn blood samples. The results are
    compelling: strikingly higher levels of four substances crucial in nervous
    system development in 95% of children with autism and mental retardation.
    Children with cerebral palsy had different biomarkers indicating prenatal
    exposure to common and treatable medical conditions may underlie many cases.
    If the findings hold, there are dramatic implications. If we can
    identify babies at risk for these conditions at birth, we may be able to
    jump start intervention. Equally important, the possibility of biomarkers
    at birth gives scientists a new and highly promising research direction in
    the search for causes.
    The next step in this research is to obtain funding so that CBDMP can
    confirm and expand upon these findings with a larger group. As this pilot
    project demonstrates, the Program is uniquely qualified to lead this effort.
    CBDMP has proven competency in data collection and state-of-the-art
    research. DHS archives newborn blood specimens and has an established
    relationship with the only laboratory in the country currently capable of
    performing this procedure. DDS Regional Centers are single points of entry
    into services– 85-90% of affected children can be found and diagnostic
    information obtained. The CBDMP's demonstrated research capability, ability
    to find cases, and access to newborn blood specimens is unique in the
    nation.
    The March of Dimes supports additional State funding for the
    California Birth Defects Monitoring Program to investigate causes of autism,
    cerebral palsy and mental retardation. Investing in this research-
    * may uncover the causes of these serious disabilities and
    contribute to improved interventions;
    * will contribute to answering critical public health questions; and
    * positions the State to receive millions in Federal research money.

    David Pisani and Ellen Powell EPowell@modimes.org
    March of Dimes
    1-888-898-2229
    * * *

    “Neuropeptides and neurotrophins in neonatal blood of children with
    autism, mental retardation, or cerebral palsy”
    Key Findings and Implications
    In the first study to find biomarkers for children with autism and
    mental retardation at birth, we found:
    Strikingly higher levels of four substances crucial in nervous system
    development in children with autism;
    The same high levels in children with mental retardation, suggesting a
    similar biologic process;
    Elevated levels of the four substances in 95% of children with autism
    and/or mental retardation;
    Children with cerebral palsy had biomarkers similar to healthy
    children.
    This successful pilot study provides new hope for parents and an
    important clue for researchers looking for causes of and cures for these
    disabilities. The implications are phenomenal:
    If we can identify babies at risk for these conditions at birth, we
    may be able to jump start intervention.
    It is important to confirm these results. However, this is a very
    promising new lead that may help solve the puzzle more quickly.
    Autism and mental retardation are among the most serious and common
    lifelong disabilities, and some reports suggest autism is on the rise.

    Questions and Answers
    What did the study find?
    A: The study found that children with autism or mental retardation,
    when compared to children without these conditions, had higher levels in the
    blood at the time of birth of four specific proteins that are crucial to
    nervous system development.
    How was the study conducted?
    A: We conducted laboratory tests on blood samples from newborn
    children who were later diagnosed with autism, mental retardation or
    cerebral palsy and children who were free of these conditions. In each
    group there were approximately 60 children. All of the children were born
    between 1983 – 1985 to mothers living in one of four San Francisco Bay area
    counties. Those years and counties were chosen for study because of
    existing data from that period and for that location on children with
    cerebral palsy and “control” children. Building on existing data enabled
    researchers to conduct this research more quickly.
    Where did the data come from?
    A: The diagnostic data on children with autism or mental retardation
    was provided by the California Department of Developmental Services (DDS)
    and the Regional Centers. Blood samples were obtained through the Newborn
    Screening Program of the DHS Genetic Disease Branch. The study was approved
    by the California Committee for Protection of Human Subjects, which has
    responsibility for assuring the confidentiality of all data.
    Aren’t these data confidential?
    A: Yes. Confidentiality of these data was maintained throughout the
    study. We have extensive procedures in place to protect the privacy of
    every child in our studies.
    Why was autism the focus of the study?
    A: Recent reports suggest that not only is autism common among
    children, but the condition may be increasing. Typically, autism, mental
    retardation and cerebral palsy cannot be reliably diagnosed until a few
    years after birth. If these conditions can be identified earlier,
    intervention that may help children with these conditions can begin sooner.
    What is autism?
    A: Autism is a severe disorder of communication and social
    interaction resulting in lifelong disability.
    Who conducted the study?
    A: The study was conducted by the California Birth Defects Monitoring
    Program (CBDMP) of the California Department of Health Services, and the
    National Institutes of Health (NIH), in collaboration with the California
    Department of Developmental Services. Funding was provided by CBDMP and
    NIH, with partial support from The M.I.N.D. (Medical Investigation of
    Neurodevelopmental Disorders) Institute at the University of California,
    Davis.
    Do the study findings mean we now have a way to positively identify
    children with autism or mental retardation at birth?
    A: No. However, based on this exciting new finding, we can target our
    research with the hope of developing a screening tool in the future. First,
    our findings must be confirmed.
    Why were these proteins selected for measurement?
    A: We selected proteins that are known to have a role in regulating
    growth and development of the brain during gestation and proteins that are
    known to contribute to long term memory, learning and responses to sensory
    stimuli. These aspects of behavior are particularly important in autism.
    We found two neuropeptides and two neurotrophins, whose levels were
    dramatically higher in children with autism or mental retardation than in
    the “control” children or children with cerebral palsy.
    Given that the diagnosis of autism is sometimes difficult, how can you
    be sure that the children in your study were correctly diagnosed? Are there
    similar concerns for cerebral palsy and mental retardation?
    A: We are very confident. We know that the diagnosis of each of
    these conditions is quite complicated so we went to great lengths to confirm
    the diagnoses on all children in the study.
    Do these findings confirm that autism and mental retardation are
    conditions that develop during gestation and are not due to environmental
    factors after birth?
    A: Our findings showed abnormal levels of certain proteins present at
    birth in children with autism or mental retardation. These findings suggest
    a potential biological indicator at birth, but they do not address the more
    complex question of WHEN these conditions occur. We know that the brain
    develops from gestation through early childhood.
    Is there any evidence that might suggest a link between autism and
    infant immunizations?
    A: Although there has been much speculation about such a link, this
    study could not address that question.
    Do these findings suggest that genes may play a role in causing autism
    or mental retardation?
    A: There is considerable evidence already to indicate that there is a
    genetic component to autism and mental retardation. This research provides
    some clues for identifying which genes may be important in the development
    of these conditions.
    Could these findings lead to prevention strategies that might be
    implemented after birth?
    A: First, these findings must be replicated in further studies. If
    our findings are correct, we’ll be able to identify children at risk for
    these conditions much earlier than currently, and practitioners can try
    various interventions to see what works.
    Parents of children with autism have suspected that diet may play a
    role in their child’s condition. Does this study provide any information on
    that issue?
    A: No. Issues involving diet were not part of the study.
    Do the results suggest a similarity between autism and mental
    retardation that we have not recognized before?
    A: Yes. For the proteins we studied, children with autism and
    children with mental retardation without autism had the same result. As
    other proteins are studied, differences may become apparent.
    Will these findings lead to a screening mechanism for all babies at
    birth?
    A: It is much too early to know. First, we must be sure that these
    findings are true. Then scientists must develop the technology to screen
    large numbers of babies—if screening is appropriate. Finally, policymakers
    must determine whether widespread screening or some other mechanism would be
    beneficial.
    Could the results also suggest that these proteins could be measured
    even before birth by drawing a sample of the unborn baby’s blood?
    A: Again, it’s much too early to know. Our results are based on one
    point in time—the newborn period. We do not know how levels of these
    proteins are different at different points in time. Future research must
    address this question.
    How confident are you of your results?
    A: As is true for all research, the scientific process depends on
    getting the same results several times. With this new and startling
    finding, we are anxious to continue this work. We have enough confidence in
    this study to launch a bigger study, once funds become available.
    How do you explain why levels of these proteins in the blood of
    children with cerebral palsy were different from the levels found in
    children with autism or mental retardation?
    A: This result is consistent with current knowledge that cerebral
    palsy represents a different kind of problem in the brain than autism or
    mental retardation. We suspect that cerebral palsy has different origins
    than autism or mental retardation. This study supports that hypothesis.
    Does this study suggest that if we could lower these high levels of
    proteins in children with autism or mental retardation that their condition
    would improve?
    A: No. The study does not answer that question. We don’t know
    whether the high levels of these proteins could cause autism and mental
    retardation, or whether the high levels are a sign of something else going
    wrong.
    What is the next step?
    A: First, in accordance with standard scientific protocol, we want to
    confirm these results by looking at blood samples from more children. Then
    we want to develop a database of children with these conditions so that we
    can look at other ways in which they are alike and different in order to
    find additional clues about causes. We also want to expand our
    communications efforts so that we can keep the public informed about this
    research as we go forward. Additional funding will be necessary to
    accomplish these goals.

    *** WHY YOU MAY WANT TO ***
    SUBSCRIBE (NO COST) TO
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    collect autism features and news as it
    breaks. To Subscribe (or unsubscribe):
    http://www.feat.org/FEATNews

    * * *

    This abstract was presented at the annual meeting of the American Academy of
    Neurology, San Diego, May 3, 2000. The manuscript detailing these findings
    will be published in late summer.

    NEUROPEPTIDES AND NEUROTROPHINS IN NEONATAL BLOOD OF CHILDREN WITH AUTISM,
    MENTAL RETARDATION, OR CEREBRAL PALSY
    Karin B. Nelson, M.D., J.K. Grether, Ph.D., James M. Dambrosia, Ph.D., Lisa
    A. Croen, Ph.D., Ben F. Dickens, Ph.D., Robin L. Hansen, M.D., Terry M.
    Phillips, Ph.D.

    Category: Autism, Mental Retardation, and Cerebral Palsy

    Objective: To investigate whether concentrations of certain neuropeptides
    and neurotrophins in neonatal blood of children with autism, mental
    retardation (MR), or cerebral palsy (CP) differed from those in control
    children.

    Background: The etiology of these developmental disabilities is
    incompletely understood and there is no known biomarker for these disorders.

    Methods: Case status was identified from records of California state
    service agencies. Immunoassays were performed masked to outcome by
    recycling immunoaffinity chromatography on archived neonatal blood drawn for
    routine metabolic screening, measuring vasoactive intestinal peptide (VIP),
    calcitonin-related gene peptide (CGRP), brain derived neurotrophic factor
    (BDNF), neurotrophin 4 (NT4), substance P (SP), and antibodies to myelin
    basic protein (MBP), glial fibrillary acidic protein (GFAP) and neuron-axon
    filament protein (NAFP). Concentrations of analytes that best distinguished
    autism and MR from controls were chosen by recursive partitioning (CART).

    Results: Concentrations of SP and antibodies to MBP were not different in
    the 4 outcome groups. Antibodies to GFAP and NAFP were significantly lower
    in children with autism and children with MR compared to control children,
    but there was considerable overlap in the distributions. Mean
    concentrations of VIP, CGR, BDNF, or NT4 were not different in children with
    autism who did or did not also have MR, nor among children with CP who were
    or were not also mentally retarded.

    Children with concentrations of 2 or more analytes exceeding these values:
    VIP >31.5 pg/ml, CGRP >32.8, BDNF >24.9, or NT4 >48.8

    N (n) %
    Autism 64 (62) 96.9 %
    MR only 66 (61) 92.4 %
    CP 65 (6) 9.2 %
    Controls 54 (0) 0 %

    Conclusions: Most children with autism or MR had concentrations of 2 or
    more of the measured neuropeptides or neurotrophins in peripheral blood in
    the earliest days of life that exceeded the levels indicated, while few
    children with CP and no control child did. These substances did not
    distinguish children with autism from those with MR.

    ________FEAT "Night of Caring" Dinner Dance June 10_______
    __________________________________________________

    Editor: Lenny Schafer | Eastern Editor: | News Wire: Ron Sleith
    schafer@sprynet.com | Catherine Johnson PhD | >
    Autism News Talk list – mailto:FEATBack-subscribe@onelist.com

    #5768

    Sharon Baxter
    Participant

    Hi Everyone,

    Just a reminder the next Autism Behavioural Therapist Training Workshop is this week-end, Saturday, May 13th. There are spaces available for anyone interested in learning the techniques of Discrete Trial Training and other behvioural principles used in Lovaas treatment programs. Please call Sharon at 786-3536 for registration information. The location is Simon Fraser University in Burnaby, from 9am – 5 pm. The cost $20 per person.

    See you there, Sharon Baxter

    #5767

    David Chan
    Member

    Hi everyone,
    I was listening to radio in the car this
    afternoon, and I heard that Bill Good is doing a
    show on Autism tomorrow Friday April, 21. We
    should tune in and check it out.

    Bill Good is on between 11:00am and
    1:00pm on CKNW 980 AM

    Dave

    #5766

    Isaac
    Participant

    Passing along a story from the FEAT Sacramento newsletter.

    ________________________________________________________

    Brick Study Calls For Epidemiology Research: NAAR

    The National Alliance for Autism Research (NAAR) calls upon the
    National Institutes of Health and the Centers for Disease Control and
    Prevention to launch a nationwide survey of the rates of autism in light of
    a startling new study that shows an unusually high prevalence of children
    affected by the disorder in Brick Township, New Jersey.
    The long-awaited study of children between ages 3 and 10 living in
    Brick Township, released Tuesday by the CDC, found 6.7 per 1,000 – or one in
    every 150 children – were affected by a range of autism disorders, including
    those who are mildly affected by the condition to those who are severely
    impaired. The prevalence of children suffering from a more narrow definition
    of autism for the year of the study – 1998 – was 4 per 1,000.
    “The CDC’s findings are astonishing,” said Dr. Eric London, NAAR’s
    Vice President of Medical Affairs. “For decades, the generally accepted
    figure and the one cited most often in the medical literature was that less
    than one child per 1,000 was affected by autism.”
    In recent years, a number of studies outside the United States have
    estimated the prevalence of autism as one out of every 1,000 children for
    the narrow range and two out every 1,000 for the entire range of autism
    disorders.
    “The results of this study need to be put into a broader context,” Dr.
    London said. “This does not necessarily mean there is a ‘cluster’ of autism
    in Brick Township. The fact is that we simply do not have enough data to
    determine the prevalence of autism in this country. We do not know if this
    is an unusually high number or if it is representative of autism prevalence
    in the United States. Only through additional research will we be able to
    evaluate the strikingly high numbers found in Brick to determine if they
    reflect the overall population or if there are disparities in the rates in
    different geographic areas,” Dr. London said.
    “That is why we are calling on the NIH and the CDC to invest in an
    autism prevalence study.”
    The high rate of autism in Brick Township underscores the widespread
    concern within the autism community that the number of children with autism
    is not only significantly higher than previously believed but possibly on
    the increase.
    “This study used the strictest possible diagnostic criteria,” Dr.
    London said. “The high numbers found in Brick Township are undeniable.”
    The Brick Township study was initiated by the “Brick POSSE,” a group
    of parents spearheaded by Bobbi Gallagher who were alarmed at what appeared
    to be an especially large number of young children in their area diagnosed
    with autism that they feared could be linked to possible toxic environmental
    exposures.
    The POSSE collected data on the number of children affected by autism
    and in 1997, with the help of NAAR, contacted the New Jersey State
    Department of Health and Human Services.
    At the behest of Sen. Robert Toricelli and Rep. Chris Smith, the CDC
    and the federal Agency for Toxic Substances and Disease Registry (ATSDR)
    developed a four-part plan that included the prevalence investigation, a
    review of the literature on environmental factors and autism, an
    investigation of environmental pathways for human exposure, and community
    education and involvement activities.
    In addition to the release of the prevalence investigation, the ATSDR’
    s report found three classes of chemicals that contaminated the township’s
    water supply at various points in time. Dr. London stated, “It would be
    difficult to link these or other chemicals to the causes of autism given our
    limited understanding of the neurobiology of autism.”
    Given the critical importance of this issue, NAAR will be funding a
    prevalence study in nearby Staten Island, an area where families are also
    concerned about the proximity to toxic waste sites.
    NAAR was founded in 1994 to fund biomedical research into the causes,
    prevention, treatment and cure of autism and related disorders. Since 1997,
    NAAR has committed over $3 million in grants to 50 scientists in the United
    States, Canada, Italy, Spain and Russia. NAAR has identified autism rates as
    a critical area of research.
    Eric London, M.D.
    Vice President-Medical Affairs
    National Alliance for Autism Research
    naar@naar.org

    *** WHY YOU MAY WANT TO ***
    SUBSCRIBE (NO COST) TO
    FEAT's Daily Newsletter: Each day we
    collect autism features and news as it
    breaks. To Subscribe (or unsubscribe):
    http://www.feat.org/FEATNews

    #5765

    David Chan
    Member

    If any one is going to the F.E.A.T. meeting in
    West Vancouver on Wednesday night, Cyntia
    Stark needs a ride from Vancouver. If you can
    give her a ride, Please call her at 827-0014

    #5764

    Sharon Baxter
    Participant

    Hi everyone,
    Here are the details for the next Behavioural Therapist Training Workshop-

    Date: May 13th, 2000
    Location: Simon Fraser University
    Maggie Benson Building
    Room # 2294
    Time: 9am-5pm
    Cost: $20.00 per person

    To register:
    1) call the FEAT of BC fax on demand # 513-7233, press 3,2,2 to get to the workshop location
    or
    2)downlown load a form
    http://www.featbc.org/downloads/abtw.pdf

    If you have any questions please call Sharon at 531-2467 and leave a message.

    Sharon Baxter

    #5763

    Sharon Baxter
    Participant

    RE: Behavioural Therapist Training Workshop

    The next workshop in the Lower Mainland has been scheduled for May 13th. This time the workshop is going to be held at SFU. This 1 day workshop is being held from 9am to 5pm. I will post another message to confirm the room number as soon as possible. Please note a registration form will not be available until such time as all the details have been confirmed (approximately a week's time). I wanted to let everyone know the date as many people have expressed an interest.

    If you have any question please call Sharon at 531-2467.

    Sharon Baxter & Rachel Russell

    #5762

    Isaac
    Participant

    a quick reminder note about the FEAT BC parent group meeting on Wednesday 03/15/00

    – 7:30PM at St. Francis in the Woods in West Vancouver. Anyone who needs a map, it can be faxed to you by calling 513-7233 or downloaded at http://featbc.org/downloads/map.pdf

    New parents are welcome — please pass on the information.

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