Monthly Archives: June 2010

Happy Father’s Day, You Fathers of Rett Girls


The dirty little secret about Caroline’s Cause is this: we are amateurs.  Amateur bloggers, amateur community organizers, and  medical laymen (except for Lisa, who is a bona fide nurse). But Rett Syndrome doesn’t strike only those of us who are well … Continue reading

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An Evening with Angels


Rett Syndrome is a rare developmental disorder that is first recognized in infancy and seen usually in girls. Rett Syndrome is caused by mutations on the X chromosome on a gene called MECP2. There are more than 200 different mutations … Continue reading

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Enjoying the hot tub


Many thank you’s go to Make-A-Wish Foundation for granting the wish for a hot tub for Caroline. The hot tub is wonderful for Caroline – it enables her to relax her muscles.  Very therapeutic and beneficial to keep Caroline limber … Continue reading

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I HAVE A MOUTH AND CANNOT EAT: Managing Food with Rett Syndrome


I am struck by the list of simple tasks that my niece, Caroline, can’t do for herself. Somewhere in the promotional material for the upcoming golf event, it says she can’t “sit, crawl, stand, talk or eat.” Can’t eat? I know … Continue reading

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Chip in For a Cure


My sister Tina created this video to tell Caroline’s story and promote the upcoming golf event for Caroline’s Cause. Tina appears in this series of pictures with Caroline and Tony, all of them playing with the paper dolls Caroline uses for … Continue reading

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About Rett Girls….


A very nice awareness video that shares about Rett Girls. http://blip.tv/file/2756182

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Rett Syndrome: Clint Black PSA


  Join International Rett Syndrome Foundation (IRSF) and Clint Black to fund the campaign for Rett Syndrome research. http://www.refresheverything.com/rettresearchtoreality

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