#counteveryinchstone - Twitter Hashtag

almost 4 years ago

Yes! We are honored to host #TheInchstoneProject working with the author, #AnneBerg & other leading COA researchers, PAGs and pharma to dig into this and find better ways of measuring smaller increments of progress by those with #DEEs. #CountEveryInchstone https://t.co/X5UNBSGSvc

Tracy Dixon-Salazar @TracyDixonSalaz

almost 4 years ago

This!!! 👇👇👇 Standardized assessment raw scores (not the composites) allow us to see the inch stones in our children. Uses the ABAS. I cannot emphasize this paper enough!!! Measuring the inch stones for progress: Gross motor function in the de... https://t.co/9Nhh6q95Hi

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DEE-P Connections @DEE_Pconnection

about 4 years ago

We are so excited to be doing this work to make sure every #inchstone gets measured! #CountEveryInchstone

FamilieSCN2A @FamilieSCN2A

about 4 years ago

Thank you to the participating patients, families and the amazing team at @DEE_Pconnection for ensuring the most severely affected patients are not excluded from clinical trials because “it is hard to measure improvement.” #CureSCN2A #SCN2A

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Gabi Conecker @ConeckerGabi

over 4 years ago

@TracyDixonSalaz @TJBichell @GConecker @US_FDA @EpilepsyFdn Thanks for your allyship! @DEE_Pconnection's #TheInchstoneProject is a way for us all to collaborate to improve the ability to measure, as @US_FDA kept saying "what really matters to #patients" (& #caregivers). It's time to #CountEveryInchstone https://t.co/iCecVlZr3a

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Gabi Conecker @ConeckerGabi

over 4 years ago

Feb 9th is International #SCN8A Awareness day. For Elliott, #SCN8A means still working on head control at 9 years old. He works so hard and has made incredible progress. #thisisSCN8A @SCN8AAlliance #counteveryinchstone

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DEE-P Connections @DEE_Pconnection

over 4 years ago

Just submitted "The Inchstone Project: Counting Every Inch of Progress" to @WHO #HealthForAll film festival. Some achievements are so incremental they cannot be measured with current tools. These are hard fought and won. https://t.co/vrAnmaX3dr It's time to #CountEveryInchstone

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