For everyone in our natural history studies please submit your crid so we can cross reference data in our studies!!! prevent survey burnout :-)
and simon's has amazing other languages too that we can use!!!!
@YBRP4hnrnph2 @hnrnph2_japan @HNRNP_Family @hnrnp_connect
🧬 Already have a CRID? Add it to your Simons Searchlight account under Account Settings: bit.ly/Simons_Searchlight_Da…
Don’t have one yet? Create your CRID at TheCRID.org, then add it to your account.
#RareDiseaseResearch #CRID #SimonsSearchlight
Feeling like some yummy Chinese food for lunch or Friday night dinner on the couch? Consider supporting a good cause!
@YBRP4hnrnph2
@PandaExpress
Who doesn't love a science fair and teaching kids about the BRAIN!? @ColumbiaPS @CSCIColumbia
Finishing up a Friday presenting with a rockstar panel of neurology educations at Columbia University Dept. of Neurology Grand Rounds!
Check out this great lecture hosted tomorrow by the @Child_Neurology
us02web.zoom.us/webinar/regi…
Bain Brain Lab retweeted
🌟 Join Simons Searchlight on Sept. 24 at 12 PM ET for a free caregiver webinar featuring guest speaker Carole Bakhos, founder of 2villages.
Learn about some free caregiver resources, practical tools, and community support through 2villages.
🔗 Register: bit.ly/2VillagesWebinar
Successful walk with Rosie, Reagan, Ava and Morgan!
@YBRP4hnrnph2
yellowbrickroadproject.org/p…
Bain Brain Lab retweeted
🧬 Today is #GeneticTestingActionDay! We're proud to join the #StartGenetic campaign to raise awareness about early genetic testing. Learn more: StartGenetic.org
💜 Download our free Family Guide: Understanding Genetic and Clinical Diagnoses: bit.ly/Genetic_Clinical_Guid…
And a new saying, from our newest family joining us from Colombia: "Troubled waters, fisherman's gain."
And how do I make it all work? My ridiculously awesome partner, who holds down the fort with our 3 kids at home!
Caregiver perspectives on daily functioning in HNRNPH2-related neurodevelopmental disorder: Development of a person-centered conceptual model
sciencedirect.com/science/ar…
Excited that we published two more papers this month — both open access for families to read. And more exciting publications in the pipeline!
onlinelibrary.wiley.com/doi/…
Being together for these days fills my cup.
I'm so grateful for my partnership with @YBRP4hnrnph2, all the fierce warrior families, and my amazing collaborators





















