[blindkid] Fw: ONH/SOD National Survey Study at Childrens Hospital Los Angeles

Sat Oct 30 14:46:57 UTC 2010

--- On Fri, 10/29/10, Garcia-Filion, Pamela <PGarciaFilion at chla.usc.edu> wrote:

From: Garcia-Filion, Pamela <PGarciaFilion at chla.usc.edu>
Subject: ONH/SOD National Survey Study at Childrens Hospital Los Angeles
To: "Garcia-Filion, Pamela" <PGarciaFilion at chla.usc.edu>
Cc: "WY Child Dev Service" <cdswy at cdswy.org>, "VIPS" <bkelley at vips.org>, "SD_ncsab" <gaye.mattke at state.sd.us>, "RI Early intervention" <eileencermak at hotmail.com>, "OK-AER" <ramiller at osb.k12.ok.us>, "MD_ncsab" <sschaffer at dors.state.md.us>, "KS_ncsab" <mdonnelly at srs.ks.gov>, "FL-Early Steps" <jlandi at health.usf.edu>, "DE ncsab" <cynthia.lovell at state.de.us>, "TX-NAPVI" <hindsa415 at aol.com>, "PA-AER & NAPVI" <lynne at obs.org>, "OH-AER" <dfast at ossb.oh.gov>, "NJ_ncsab" <vito.desantis at dhs.state.nj.us>, "ME-CCIDS" <lu.zeph at umit.maine.edu>, "MA-NAPVI 1" <sue.rawley at verizon.net>, "FL Lighthouse for the Blind" <vjacko at miamilighthouse.org>, "CT Oak Hill School" <johnsonp at ciboakhill.org>, "WY N. Rockies AER" <lvanor at educ.state.wy.us>, "WI AER" <langhto at dhfs.state.wi.us>, "MI School for the Blind" <baumanc at michigan.gov>, "AR-NAPVI" <ar.napvi at gmail.com>, "AK1" <asimpson at picak.org>, "WY NCSAB" <jmcint at wyo.gov>, "RI_ncsab" <ronr at ors.ri.gov>, "OH NCSAB"
 <mike.hanes at rsc.state.oh.us>, "GA-NAPVI" <gaviprogram at coe.fsu.edu>, "CT BOE for Blind" <jeanette.haines at ct.gov>, "CO-NCSAB" <nancy.smith at state.co.us>, "CA-NAPVI2" <carlos at blindchildrenscenter.org>, "AL-NAPVI" <gremauxtime at aol.com>, "AK20" <jean.kincaid at mssca.org>, "VA NSAB" <melody.lindsey at dbvi.virginia.gov>, "TX_napvi2" <kim at gulfimagesphoto.com>, "NC_NCSAB1" <Dwight.Pearson at ncmail.net>, "MT School for D & B" <sgettel at msdb.mt.gov>, "KS-AER" <michael.epp at envisionus.com>, "IN ncsab" <greg.mcaloon at fssa.in.gov>, "GA NCSAB" <paul.raymond at dol.state.ga.us>, "MT_msdb" <dflonaker at msdb.mt.gov>, "IA-NAPVI2" <szubak at iowa-braille.k12.ia.us>, "FL-AER" <hadselj at ocps.net>, "AK11" <lthomas at comconnections.org>, "VA Infant & toddler connection" <cfhill@@vcu.edu>, "NH_ncsab" <bfinn at ed.state.nh.us>, "NC-AER" <ghray at mindspring.com>, "MO_ncsab" <mark.laird at dss.mo.gov>, "ME_ncsab" <john.m.mcmahon at maine.gov>, "MA_ncsab" <janet.labreck at state.ma.us>, "HI-AER"
 <christian_yates at notes.k12.hi.us>, "CA ncsab" <sherryl.glinsky at va.gov>, "NY School for Blind" <dstamp at mail.nysed.gov>, "MO Alpha Pointe Assn for Blind" <cberry at alphapointe.org>, "ID ncsab" <ajones at icbvi.state.id.us>, "AL-napvi" <chantalmcmanus at yahoo.com>, "AK-6" <mluther at seaviewseward.org>, "AK-3" <amorris at acsalaska.net>, "WY Children's Learning Center" <jmontagne at learningcenterywy.org>, "MD-AER" <janef at mdschblind.org>, "CA-Azusa Unified" <stacyc at azusausd.k12.ca.us>, "AK18" <afaulkner at fcsonline.org>, "TX NCSAB" <barbara.j.madrigal at dars.state.tx.us>, "NM-AER" <eyeguy4 at juno.com>, "nm_ncsab" <greg.trapp at state.nm.us>, "MN_ncsab" <chuk.hamilton at state.mn.us>, "CO-NAPVI 3" <quintana_g at cde.state.co.us>, "AK19" <cynthia at acca-ilp.org>, "LA-AER" <ericguillory at aol.com>, "DV Lighthouse for the blind" <arnoel at clb.org>, "AZ-NAPVI" <venetiahayden at hotmail.com>, "AK16" <pwsilp at ctcak.net>, "WV NCSAB" <sherik at mail.drs.state.wv.us>, "WA NAPVI 2" <kalfonso at clb.org>, "VT
 NCSAB" <fred.jones at ahs.state.vt.us>, "ND-NAPVI" <Kartescs at polarcomm.com>, "NB NCSAB" <dabraun at nvdetr.org>, "MI-NAPVI" <Bottingjg at juno.com>, "CA-NCSAB" <acandela at dor.ca.gov>, "BCLC" <kathy.goodspeed at blindkids.org>, "AK9" <homerilp at xyz.net>, "PA_ncsab" <ddenotaris at state.pa.us>, "NJ- AER2" <robert.fitzgerald at dhs.state.nj.us>, "ND_ncsab" <hbaumgartner at nd.gov>, "MS_ncsab" <bmcmillan at mdrs.state.ms.us>, "MN Lighthouse" <hhanson at lighthousefortheblind-duluth.org>, "MI-AER" <kullen at gdabvi.org>, "KY-AER" <cindy.adair at hardin.kyschools.us>, "Kathy Cardinal" <kathycardinal at adelphia.net>, "DE_ECAP" <jrcornwell at lf.k12.de.us>, "AK10" <bevingram at reachak.org>, "S.CA-AER" <almygt at earthlink.net>, "OK_resrc coord" <christina_caliguire at sde.state.ok.us>, "MO- DG Center Early Intervention" <lrohr at dgckids.org>, "IL-Hearing Vision Connection" <mindy.ely at illinois.gov>, "FL school for D&B" <hofmannm at fsdb.k12.fl.us>, "AK4" <americus at ctcak.net>, "KY" <kmurphy at redwoodnky.org>, "AK2"
 <bbaldwin at focusoutreach.org>, "VA- EI services" <maryann.discenza at dbhds.virginia.gov>, "NY early intervention" <bei at health.state.ny.us>, "NE_ncsab" <pearl.vanzandt at nebraska.gov>, "NC Ncsab" <mary.flanagan at ncmail.net>, "MT NCSAB" <jmathews at mt.gov>, "GA Center for VI" <sgreen at cviatlanta.org>, "CA Hope Infant 2" <osselaer at sdcoe.k12.ca.us>, "TN_ncsab" <terry.smith at state.tn.us>, "Terese Pawletko" <teresepawl at yahoo.com>, "NE" <jacyvermaas-lee at creighton.edu>, "DC Dept of hlth services" <jerri.johnston-stewart at dc.gov>, "CT-NCSAB" <brian.sigman at ct.gov>, "AK14" <ppartridge at nshcorp.org>, "OH NAPVI" <rlmiller423 at gmail.com>, "NH-NAPVI" <nfeole at comcast.net>, "NE-AER" <schepler at gtmc.net>, "AK15" <brynn.bolling at comconnections.org>, "OK_ncsab" <jcnelson at drs.state.ok.us>, "NV DoE" <rfitzpatrick at doe.nv.gov>, "FL-FSU" <epace at fsu.edu>, "BCC" <fernanda at blindchildrenscenter.org>, "AK6" <erin.kinavey at alaska.gov>, "VA AER" <michael.triplett at dbvi.virginia.gov>, "ME CCIDS"
 <ccidsmail at umit.maine.edu>, "CA-NAPVI 2" <anthony_t at cde.state.co.us>, "AR-NCSAB" <katy.morris at arkansas.gov>, "AL-Instructional Rsrc Center" <lacy.teresa at aidb.state.al.us>, "AFB" <bboyer at aph.org>, "VIPS-2" <ahamm at vips.org>, "MO-NAPVI" <bbeal at msb.k12.mo.us>, "MO_State" <shelly.blomstrom at dss.mo.gov>, "IA ncsab" <karen.keninger at blind.state.ia.us>, "AZ15" <sylvia at accsa-ilp.org>, "AK7" <lstiehr at focusoutreach.org>, "LA_ncsab" <kmonk at dss.state.la.us>, "GA academy for the blind" <darensma at doe.k12.ga.us>, "FL Conklin Center" <robert at conklincenter.org>, "BBF" <spaite4 at aol.com>, "AZ-NCSAB" <ehouse at azdes.org>, "NC Early Intervention" <deborah.carrol at dhhs.nc.gov>, "NAPVI-7" <cox_20499 at msn.com>, "AK-5" <laurie.thomas at comconnections.org>, "AK17" <gtrujillo at cfc.org>, "MS Reach Center for Blind" <cconyers at mdrs.state.ms.us>, "AL-AER" <joe.helm at rehab.alabama.gov>, "AK-4" <kmix at reachak.org>, "AK12" <nancy.wells at kanaweb.org>, "Te" <CMOR2020 at aol.com>, "NJ-AER"
 <grodz5 at comcast.net>, "IA-NAPVI" <jyessak at iowa-braille.k12.ia.us>, "GA_ncsab" <rebecca.sills at dol.state.ga.us>, "DC-NCSAB" <marilyn.griffin-clark at dc.gov>, "CA Parents helping parents" <denny at php.com>, "CA Hope Infant " <mberk at sdcoe.k12.ca.us>, "AK5" <elizabeth_galloway at ykhc.org>, "AK13" <charmon at nwarctic.org>, "UT AER" <emauerman55 at msn.com>, "TX_napvi3" <maggiewel at hotmail.com>, "PIVIT" <ruthdavid at sbcglobal.net>, "MI_ncsab" <cannonp at michigan.gov>, "DC NCSAB" <roy.albert at dc.gov>, "CA-TLC for the blind" <ddennis at tlc4blind.org>, "AK8" <hnsilp at aptalaska.net>, "VT BVI" <spouliot at vabvi.org>, "OH_napvi" <sfriedman at clevelandsightcenter.org>, "NM_Blind School" <llyle at nmsbvi.k12.nm.us>, "NC NCSAB" <debbie.jackson at ncmail.net>, "IL_ncsab" <bettye.odem-davis at illinois.gov>, "AR-napvi" <arkansas_napvi at earthlink.net>, "NY_ncsab" <brian.daniels at ocfs.state.ny.us>, "MA-NAPVI" <reilystinytots at msn.com>, "LA early steps" <jridgeway at dhh.la.gov>, "NY-AER" <sumullen at aol.com>, "ND
 NCSAB" <wbye at nd.gov>, "MI Agency for Blind & VI" <mcentee at gdabvi.org>, "KY-NAPVI" <patty.dilg at ksb.kyschools.us>, "FL ncsab" <joyce.hildreth at dbs.fldoe.org>, "NV Idea Part C" <wwhipple at adsd.nv.gov>, "NFB" <bcheadle at nfb.org>, "Hi ncsab" <lgrupen at dhs.hawaii.gov>, "CO- School for D&B" <ltutt at csdb.org>, "AL-Institute D& B" <lowry at charlotte@aidb.stte.al.us>, "WY Children's Rsrces Center" <crcadmin at bresnan.net>, "VA-NAPVI" <dpkdkd at yahoo.com>, "TX_napvi4" <Robinsonj at tsbvi.edu>, "MO School for Blind" <pyocum at msb.k12.mo.us>, "OR-AER" <braillelady at comcast.net>, "OR_ncsab" <linda.mock at state.or.us>, "ND_SD-AER" <dgiessin at nd.gov>, "VIPS-1" <melissal at vips.org>, "Gloria Rodriguez" <gloria.gil at gte.net>, "FL-FFCVI" <Town111 at bellsouth.net>, "AK-2" <francesca.ridenour at tananachiefs.org>, "WA NCSAB" <loudurand at dsb.wa.gov>, "VT Children's Integrated Services" <karen.garbarino at ahs.state.vt.us>, "NAPVI-4" <mojo.allen at charter.net>, "FL FSU" <ffcvi at yahoo.com>, "CA NCOE"
 <anne.kuschner at draccess.org>, "UT_ncsab" <bgibson at utah.gov>, "TX NFB" <awolf at nfb-texas.org>, "SC_ncsab" <jkirby at sccb.sc.gov>, "NC_ncsab" <Laura_Curtis at unc.edu>, "FL-D&B school1" <mcmenemyd at fsdb.k12.fl.us;strasselq at fsdb.k12.fl.us;dayc at fsdb.k12.fl.us>, "FL IYC" <pgrosz at tampabay.rr.com>, "DE-ECAP 2" <evgraham at lf.k12.de.us>, "DE ncsab" <robert.doyle at state.de.us>, "DE Div of VI" <bob.goodhart at state.de.us>, "VT State DOE" <sbissonette at vabvi.org>, "MA Perkins School for Blind" <steven.rothstein at perkins.org>, "AK3" <susan at acca-ilp.org>, "AK-1" <eschneider at bbahc.org>
Date: Friday, October 29, 2010, 6:22 PM

Dear resource providers for visually impaired children,

I have some exciting updates to share since our last email in July.  

1)  I've been overwhelmed by the many emails from resource providers requesting that they be added to our distribution list.  We have more than doubled our distribution list!  This substantially helps our effort by increasing the number of service providers we're able to reach.  Please continue to forward this email to any of your colleagues and encourage them to contact me to added to the listserv. 

2)  Finally, an easier way to reach the survey and pass it on.  We've acquired the following web domain name for our very important survey for families with a child diagnosed with ONH.  www.onhsurvey.org.  I'm sure it will become a household name in no time!

As a reminder, the ONH/SOD Disease Distribution Study is an on-going survey aimed at understanding the geographic distribution of ONH/SOD and the association with population and environmental factors.  Please continue to distribute this 6-question survey to your families with a child diagnosed with ONH/SOD.  Attached you will find a survey packet for families and an information sheet for resource providers.  As we enter the 6th year of the study, we are receiving approximately 25 surveys each month.  This is an impressive participation rate, and we owe it all to you - the resource providers for these families.  Thank you!

ONH/SOD continues to rise in prevalence, but we still don't know what the prenatal risk factors are.  This survey is critical to directing research into what the contributing factors may be.  

The Vision Center at CHLA is committed to improving the lives of children with ONH/SOD through research - both clinical and epidemiologic.  Our program administrator has created a Facebook page; please feel free to visit it by searching for "optic nerve".  Also, attached is an article we recently submitted for the Envision Vision Rehabilitation newsletter (article on page 13).

If you have any questions about this survey or our ONH/SOD research program, please feel free to contact us at (323) 361-2267 [Cassandra Fink].

Thank you again for your support.  

Kind Regards,
Pamela

Pamela Garcia-Filion, MPH

Clinical Research Associate
The Vision Center
Childrens Hospital Los Angeles
www.thevisioncenteratchla.org

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