Insta Feed

Follow us on Insta to see what is happening in our world of See CVI, Speak AAC, where we share quick shots of communication exchanges, advocacy, and build outs.

Our girl is truly someone rare. ❤ Today, Emma is spotlighted on @yellowbrickroadproject to highlight this rare genetic disorder Emma shares with about 70 other individuals worldwide: hnrnph2. We are trying to find other families. Please share. No one should be an island... and we are racing for a cure!! We were amazed to learn of all the research being done!! ❤ We were so blessed to find Emma's genetic sisters this summer. ❤
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#rare
#yellowbrickroadproject
#hnrnph2
#cvi
#neurologicaldisorder
#proteinerror
#shesrare
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When you just want to do your fave thing after a day at school. .
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#veggingwithvideos
#whitecane_CVI
#talker
#seeCVISpeakAAC
#cviawareness
#cviadvocacy
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#skiMeskiAAC
Words EVERYWHERE!!!
#seeCVIspeakAAC
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15 1

Just because you are skiing and there's no room for your iPad Pro 13", doesn't mean you shouldn't have your words! Having fun on the slopes and chatting about it! .
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#skiMeskiAAC
#seeMeseemyAAC
#ilikeitFun
#iSKIiAAC
#seeCVIspeakAAC
#aac
#aaceverywhere
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If you haven't yet, please take the time to write, briefly or comprehensively, about the need for research and funding that research on CVI!
Need some ideas on what to write?

Head over to the www.pcvis.vision blog!! #PCVIS
@pcvis.vision
#cvi
#cviawareness
#cviadvocacy
#cviresearch
#fundingresearch
#nih
#nih_cvi_research
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Our CVI poster girl before we understood enough about CVI to give her visual access to her world and means to communicate her thoughts, ideas, feelings and more. ❤ #10characteristics #CVI #latency #PCVIS #seeCVIspeakAAC ...

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Join us!! Help us demonstrate the need for more research on CVI with this powerful funding source!! Every voice counts, together let us be the loudest, strongest choir of voices to make the desperately needed research and changes in this field!!
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#pcvis
#cviadvocacy
#cviawareness
#startresearchingCVI
#startfundingCVIresearch
#cviNo1PediatricVisualImpairment
#seeCVI
#seeCVIspeakAAC
#seeCVIspeakAdvocacy
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Color anchoring. Adaptations! There is a reason we use them, they work!! .
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#coloranchor
#10charateristics
#preferredcolor
#cvi
#ski
#adaptiveathlete
#nolimits
#wildhorn @wildhorn
#giro
#biski
#mountainman
#seeCVIspeakAAC
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13 0

#1 Pediatric Visual Impairment in developed countries, yet still widely undiagnosed, undertreated, misdiagnosed and mistreated.
Has also been called a national health crisis.

When will this change?!? More than a decade of lost opportunities for our daughter because of her CVI.

Be part of the change that our kids need!!
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#pcvis
#seeCVIspeakAAC
#startseeingcvi
#corticalvisualimpairment
#10charateristics
#cviawareness
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