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Ali Patient Expert

Norfolk, Virginia
Mommy, Navy wife & founder of Global Hydranencephaly Foundation, a nonprofit organization working to change the lives of families who have been touched by a diagnosis of this rare neurological condition for their own child.
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We NEED Your Help: Pediatric Brain Mapping Project by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health Recently, we have developed a working relationship with  Children's Neurobiological Solutions Foundation  (CNS Foundation). For those unfamiliar with this amazing no ... Read on »
BEE-AWARE: Brain Aware by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health Yesterday marked the start of this year's Brain Awareness Week... At one of the following events is where I could have been Students unlock the mysteries of the brain ... Read on »
Fact-BUZZ Friday: Finally! by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health 996 days that's 2 years, 8 months, and 20 days or  a little over 142 weeks which is a whopping 23,904 hours or 1,434,240 minutes and a seemingly never-en ... Read on »
Thought-Filled Thursday: Humor & the Hospital by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health This great article, compliments of our friends at Complex Child E-Magazine and founder Susan Agrawal , has lapped the social media special needs circles a bit over the pas ... Read on »
Word-Filled Wednesday: Spread the Word by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health Grab yourselves a dictionary or perhaps you should invest in a thesaurus? thesaurus: noun a book that lists words in groups of synonyms and related concepts. ... Read on »
BUZZ: Wiki-What? by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health As my own daughters are beginning to do more and more research online for school, the same phrase I heard throughout my college years (yes, only my college years sin ... Read on »
Wordless Wednesday: Powerful! by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health Have you EVER watched a video in which there were either no words uttered... or no words that you could understand; yet it said SO very much? It's similar to the lives ... Read on »
Tried & True Tuesday: Nix Unnecessary Prenatal Testing by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health This post could teeter on the edge of controversial for some, so I am just not going to delve in to the specifics... not today anyways! This post will be semi-short & rela ... Read on »
Feeding Tube Awareness Week Kick-off by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health Today marks the start of an immensely important awareness endeavor Feeding Tube Awareness Week is February 9-15, 2014. Always the second week of February, so as to coincid ... Read on »
Bee-ography: Jayne Katherine by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health On Christmas Eve I opened my email inbox to discover the usual Google alert regarding new posts containing the word "hydranencephaly" within them and moved it to my "read ... Read on »
How're Things Stacking Up? by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health Having a child with complex medical needs is a difficult enough position to find yourself in as a parent. Fighting to provide your child with the best quality o ... Read on »
Thought-Filled Thursday: ONE by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health I've met head-on with several nasty remarks and equally disgusting opinions on the topic of hydranencephaly over the course of the past 6 years. It's part of being an advo ... Read on »
Tried & True Tuesday: Globe-Trotting! by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health We've tried it all...  sharing stories bunking "myths" squashing false "facts" threats Ok, not threats... well, not usually ;) But, the one effort that always sna ... Read on »
Thought-Filled Thursday by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health I HEART Maysoon Zayid! Seriously, I do! But it's fairly likely that you don't know who she is.... so, let's fix that!  I discovered her in my latest daytime o ... Read on »
Tried and True Tuesday: BRRR to the RRRR! by Ali Patient ExpertFacebook Posted in: Blog Posts in Children's Health photo credit Winter has been pretty brutal for a large chunk of the US and keeping ourselves warm is difficult enough without worrying over the level of ... Read on »