Facebook Directory Confirmation

The group is a closed list and we have a very strict privacy policy. Before approving you as a member, we may use the address and phone number to contact you to confirm your wish to join our group. This may seem a little outrageous just to join a facebook group, but it is the only way to ensure that the group stays a “parents/family only” group. I hope that you will understand this and still wish to join our group.

All members are listed in the online directory (current under construction). Items 5 and 6 will be kept STRICTLY confidential unless you select “List address information in the Directory”. If you choose No for this option, your address and phone number will not be listed. You will only be listed by your State and Country

* = Required Field

* 1. Your Name : * AS IT APPEARS ON FACEBOOK

2. E-mail Address:
* 4. Password :
(This will be used to access the group member directory and is seperate from your yahoo password!)

Address Info :
Do you want your address information listed in the group Directory ? Yes 
No 

* 5. Your Street Address :

City :

State/Prov :Select your state/provAlaskaAlabamaArkansasArizonaCaliforniaColoradoConnecticutDist. of Col.DelawareFloridaGeorgiaGuamHawaiiIowaIdahoIllinoisIndianaKansasKentuckyLouisianaMassachusettsMarylandMaineMichiganMinnesotaMissouriMississippiMontanaNorth CarolinaNorth DakotaNebraskaNew HampshireNew JerseyNew MexicoNevadaNew YorkOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahVirginiaVirgin IslandsVermontWashingtonWisconsinWest VirginiaWyomingOTHER (Outside USA)AlbertaBritish ColumbiaManitobaNew BrunswickNewfoundlandNorthwest TerritoriesNova ScotiaNunavutOntarioPrince Edward IslandQuébecSaskatchewanYukon Territory
Outside USA/CA, please select OTHER

Other :

Zip Code/Postal Code:

Country:Select your countryUnited StatesCanadaAfghanistanAlbaniaAlgeriaAndorraAngolaAnguillaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBassas Da IndiaBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBritish Virgin IslandsBruneiBulgariaBurkina FasoBurmaBurundiCambodiaCameroonCanadaCape VerdeCayman IslandsCentral African RepublicChadChileChinaChristmas IslandClipperton IslandCocos (Keeling) IslandsColombiaComorosCongoCongo, Democratic Republic Of TheCook IslandsCoral Sea IslandsCosta RicaCote D’IvoireCroatiaCubaCyprusCzech RepublicDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEthiopiaEuropa IslandFalkland Islands (Islas Malvinas)Faroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern and A. LandsGabonGambia, TheGaza StripGeorgiaGermanyGhanaGibraltarGlorioso IslandsGreeceGreenlandGrenadaGuadeloupeGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and Mcdonald IslandsHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle Of ManIsraelItalyJamaicaJan MayenJapanJerseyJordanJuan De Nova IslandKazakhstanKenyaKiribatiKuwaitKyrgyzstanLaosLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacauMacedoniaMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesia, Federated States OfMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueNamibiaNauruNepalNetherlandsNetherlands AntillesNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNo Man’s LandNorfolk IslandNorth KoreaNorwayOceansOmanPakistanPalauPanamaPapua New GuineaParacel IslandsParaguayPeruPhilippinesPitcairn IslandsPolandPortugalQatarReunionRomaniaRussiaRwandaSaint HelenaSaint Kitts and NevisSaint LuciaSaint Pierre and MiquelonSaint Vincent and The GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia & S.S.I.South KoreaSpainSpratly IslandsSri LankaSudanSurinameSvalbardSwazilandSwedenSwitzerlandSyriaTaiwanTajikistanTanzaniaThailandTogoTokelauTongaTrinidad and TobagoTromelin IslandTunisiaTurkeyTurkmenistanTurks and Caicos IslandsTuvaluUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUzbekistanVanuatuVatican CityVenezuelaVietnamVirgin IslandsWallis and FutunaWest BankWestern SaharaYemenZambiaZimbabweOTHER
Unlisted Country, please select OTHER

Other Country:

*6. Your Phone Number :

If your child or a child in your family has lissencephaly, please complete questions 7, 8 and 9, otherwise skip to item 9.

7. Child’s Name :

8. Child’s Diagnosis :Please select your childs diagnosisILS – Isolated Lissencephly SyndromeMiller-Dieker Syndrome (MDS)Lissencephaly with Cerebellar Hypoplasia (LCH)Walker-Warburg Syndrome (WWS)Fukuyama Congenital Muscular Dystrophy (FCMD)Muscle-Eye-Brain disease(MEB)Microlissencephaly (MLIS)Subcortical Band Heterotopia (SBH)X-Linked Lissencephaly with Ambigious Genitalia (XLAG)Microcephaly with Simplified Gyral patterns (MSG)Polymicrogyria (PMG)Other – Not Listed Above
If Not listed, please select OTHER and enter below

Other :

9. Child’s DOB:Select MonthJanuaryFebruaryMarchAprilMayJuneJulyAugustSeptemberOctoberNovemberDecemberSelect Day12345678910111213141516171819202122232425262728293031Select DOB Year202320222021202020192018201720162015201420132012201120102009200820072006200520042003200220012000199919981997199619951994199319921991199019891988198719861985198419831982198119801979197819771976197519741973197219711970

10. Reason for request :Please select your reason for joining the groupIndividual with LissencephalyParent of Child with LissencephalyGrand Parent of Child with LissencephalyOther family member (specify below)DoctorNurseOther Care Giver (specify below)Other (specify below)
If OTHER, please enter below

Other :

11. Comments :

There is a lot of medical information which is passed around on the group. This is information from other parents on what may have worked for them. To try to protect the group members and you from any legal action which may result from mis-use of the group information, we ask that you read and agree to the following disclaimer statement. We cannot approve your request unless you agree to this disclaimer.

DISCLAIMER (Legal mumbo jumbo)

By accepting membership to the group, you release all group members from any
legal liability for advice given on the group. You also agree that the group is
not liabable for anything its individual members say or email they may send.
This advice should be used cautiously.  What may have worked from one
lissencephaly child may not work for your child.  CONSULT YOUR DOCTOR FIRST.

By accepting group membership you also certify that you will not use any
information obtained from the group for any type of medical research.  Your
personal experiences with the group can be shared, but please remember to
obtain permission before mentioning any group member by name/description.
The group discussions are meant only to help other parents cope with raising
a child with lissencephaly.  Anyone breaking this "rule" will be immediately
and permanently banned from this group.

I Agree
I do not agree