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Closed Captions file for CHARGing Into the Teens - CHARGE ...

Closed Captions file for CHARGing Into the Teens - CHARGE ...

Closed Captions file for CHARGing Into the Teens - CHARGE

CHARGE Syndrome FoundationCHARGing into the Teens Webinar transcript, November 11, 2012WEIR: Well, good evening everyone. My name is Lisa Weir, and for those of you whodo not know me, I'm the vice president of the CHARGE Syndrome Foundation. And onbehalf of the board of directors for the CHARGE Syndrome Foundation, I would like towelcome everyone to this CHARGing into the Teens webinar. And I know that Randyjust mentioned, but I just want to mention again if we can kind of save the chat box forthe questions, it will help our moderators in terms of gathering the questions for the end.So that would be great if everyone could respect that.It is my pleasure tonight to introduce you to our guest speaker. We are thrilled tohave Dr. Kim Blake with us. And just a little bit about Kim, she began her involvementwith CHARGE Syndrome 30 years ago at Great Ormond Street Hospital in the UK,where she lectured on CHARGE and published several of the earliest papers describingthe syndrome. She was instrumental in organizing the UK family support group. Andsince moving to Canada, she has continued to be involved with the CHARGE SyndromeFoundation.She's been invited speaker at every conference, and received funding from thefoundation for several of her research projects. Kim's research career continues tofocus on CHARGE, particularly, the issues of the adolescent and adult population. Sheroutinely involves students in her research both educational and clinical. Most of herstudents have had abstracts or papers published. Kim has recruited many local medicalfaculty members in her research and developed the Center of Excellence for Researchand Knowledge in CHARGE Syndrome.She is regularly asked to present on CHARGE Syndrome both nationally andinternationally. Her most recent research projects have included the effects ofanesthesia, feeding difficulties in obstructive sleep apnea in individuals with CHARGESyndrome, the clinical utility gene card for CHARGE Syndrome, and she and the teamat the IWK hospital, in Halifax, Nova Scotia, are embarking on a new research projectinvolving the ENT and genetics department involving the MBG scanner and looking atlower cranial nerve.I've Introduced Kim before, and I can't do so again without mentioning howinstrumental she has been in our lives, since our own daughter was born. When wereceived the diagnosis almost 15 years ago, we felt very lost trying to figure everythingout and thinking about what life would be like. Kim bounced into the neonatal unit, fullof energy, positivity, and a let's get on with the attitude that really helped transform ourthoughts on how this journey with CHARGE would proceed.Kim does so much for the field of CHARGE in terms of everything I've justmentioned, and participating in webinars and training such as this one. But one of thevery special things about Kim is her genuine connection to the families and thedifference she makes to us on the very personal level. So thank you, Kim, for all youdo, and we look for to sharing this evening with you.1

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