Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Meg et al., Excellent. Is there some kind of push to disseminate this information to as many health care professionals as possible? They NEED to see updated information like this and pass the correct information onto families. Kudos to the CHARGE Syndrome Foundation!!! > > Hi everybody, > Once agian, we have an update to the CHARGE Syndrome > Foundation website www.chargesyndrome.org to anounce! The > " About CHARGE " link has been updated - that means there is > up to date information on diagnsis of CHARGE (and the gene) > including lots and lots of photos illustrating the different > features of CHARGE. Go take a look! You'll see many of > your friends! > > An remember, if you like all that the Foundation does for > you (website, Manual, Conferneces...) - please join, and > maybe send an additional contribution (I've been listening > to spring fund drive on NPR all week, sorry). It's how we > survive! We also take suggestions for addtions and > improvements! > Meg > > Meg Hefner, M.S. > Genetic Counselor > St. Louis, MO > hefnerma@... meg@... > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Meg, I love the updates--my only criticisim (and this is the optometrist in me being nit-picky) is that the picture of the coloboma is an iris coloboma. Optic nerve and/or retinal colobomas seem to be more common and have a greater impact on vision--could you include a picture of an optic nerve coloboma as well (maybe next to a picture of a normal optic disc and retina for comparison)? (mom to Evan 9.5 mos) Meg Hefner wrote: Hi everybody, Once agian, we have an update to the CHARGE Syndrome Foundation website www.chargesyndrome.org to anounce! The " About CHARGE " link has been updated - that means there is up to date information on diagnsis of CHARGE (and the gene) including lots and lots of photos illustrating the different features of CHARGE. Go take a look! You'll see many of your friends! An remember, if you like all that the Foundation does for you (website, Manual, Conferneces...) - please join, and maybe send an additional contribution (I've been listening to spring fund drive on NPR all week, sorry). It's how we survive! We also take suggestions for addtions and improvements! Meg Meg Hefner, M.S. Genetic Counselor St. Louis, MO hefnerma@... meg@... CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 cool so nwo when soemone asks bout it we can just point them in the direction of that instead of calling for you meg though there i times when i believe you explain things well that people might be asking like ratios of kids and stuff > > Am I just not seeing it or is the actual criteria for a diagnosis not > included. The old page stated what was needed to have a diagnosis and I > don't see it anymore. If it is there and I am not seeing it, would someone > point it out to me? > > > Mom to 3 yrs CHARGE > > > Meg Hefner wrote: > Hi everybody, > Once agian, we have an update to the CHARGE Syndrome > Foundation website www.chargesyndrome.org to anounce! The > " About CHARGE " link has been updated - that means there is > up to date information on diagnsis of CHARGE (and the gene) > including lots and lots of photos illustrating the different > features of CHARGE. Go take a look! You'll see many of > your friends! > > An remember, if you like all that the Foundation does for > you (website, Manual, Conferneces...) - please join, and > maybe send an additional contribution (I've been listening > to spring fund drive on NPR all week, sorry). It's how we > survive! We also take suggestions for addtions and > improvements! > Meg > > Meg Hefner, M.S. > Genetic Counselor > St. Louis, MO > hefnerma@... meg@... > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > > > > Quote Link to comment Share on other sites More sharing options...
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