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Bain Brain Lab @BainBrainLab

🔬 Neurogenetics at Columbia | HNRNPH2 & brain development research | Dr. Bain | bainbrainlab.com

Joined June 2021
  • Tweets 1,172
  • Following 639
  • Followers 637
398 Photos and videos
It is a pleasure to collaborate with n-Lorem Foundation for treating ultra rare genetic disorders. Our lab is now treating 12 of the first 50 patients (WOW!!!) with custom ASOs in the clinic and our queue is growing. academic.oup.com/nar/article… nlorem.org/new-publication-p…

Addressing the needs of nano-rare patients: the n-Lorem experience

Abstract. Patients with extremely rare pathogenic variants pose unique challenges to current healthcare systems. Nano-rare mutations have been defined as m

academic.oup.com
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Our growing lab and collaborators! neurology.columbia.edu/resea…

Bain Lab

The Bain Lab studies how rare genetic variations influence brain development and neurodevelopmental outcomes.

neurology.columbia.edu
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Bain Brain Lab@BainBrainLab
Jun 3
Next step, how can we make this sustainable and applicable to more patients in our healthcare system!
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Bain Brain Lab@BainBrainLab
May 28
Participating in Clinical Research: What Patients and Families Should Know rarediseases.zoom.us/webinar…

Video Conferencing, Web Conferencing, Webinars, Screen Sharing

Zoom is the leader in modern enterprise video communications, with an easy, reliable cloud platform for video and audio conferencing, chat, and webinars across mobile, desktop, and room systems. Zoom...

rarediseases.zoom.us
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Bain Brain Lab@BainBrainLab
May 27
Check my friend and colleague, pediatrician Dr. Alisa Minkin! Listening to "Helping Our Autistic Kids Thrive with Temple Grandin, PhD" at buzzsprout.com/2570205/episo…

Helping Our Autistic Kids Thrive with Temple Grandin, PhD - Kids...

Helping Our Autistic Kids Thrive with Temple Grandin, PhDIn this episode, Dr. Temple Grandin talks about the importance of ALL kinds of minds, including autistic ones. She talks about how we are

buzzsprout.com
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Bain Brain Lab@BainBrainLab
May 22
Thank you to the HNRNP Family Foundation for supporting our team in writing about SYNCRIP related disorder and assuring we are making it more well described in the literature! @HNRNP_Family @hnrnp_connect ncbi.nlm.nih.gov/books/NBK62…
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Bain Brain Lab retweeted
Simons Searchlight@s_searchlight
May 13
💜 Today we celebrate #MED13LAwarenessDay w/ our advocacy partners the entire #MED13L community! We have 285 participants w/ MED13L-related syndrome in #SimonsSearchlight. 🌟 Explore gene info, data, resources, & more: bit.ly/SimonsSearchlight_MED… #CareForRare #RareDiseaseResearch
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Bain Brain Lab retweeted
n-Lorem Foundation@n_lorem
May 11
In May we recognize TUBB4A Awareness Month💙 TUBB4A-related leukodystrophy disorders are rare genetic conditions that affect the brain’s white matter, disrupting myelin sheath development. These conditions can impact movement, development, and coordination.
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Bain Brain Lab retweeted
n-Lorem Foundation@n_lorem
May 6
Join n-Lorem CEO Stan Crooke and Callan Pleasant for an heartfelt conversation about raising a child with HNRNPH2, a nano-rare disease. Listen now! youtube.com/watch?v=f6jk3zzr…
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Phenomenal trip to Brighton UK for the first HNRNPH2 Meeting of 2026! Thank you as always for hosting and great to see these amazing families and growing girls (and boys)!!! @YBRP4hnrnph2 @n_lorem @KidsAtColumbia @WeinbergCP @hnrnph2_japan @HNRNP_Family
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And congrats to the growing list of international sister orgs!! Keep it going as we grow out internationally!
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Bain Brain Lab@BainBrainLab
Apr 24
Let’s treat some adults!! Bridging the gap in treatment trials for neuro developmental disorders in our older patients! New challenges and red tape to burst thru! @YBRP4hnrnph2
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Bain Brain Lab@BainBrainLab
Apr 22
Excited to be featured by partner nLorem!
n-Lorem Foundation@n_lorem
Apr 21
50 patients. Countless possibilities. n-Lorem’s 50th nano-rare patient has now been treated with a personalized experimental ASO. A milestone for precision medicine and hope for families worldwide. Read more: businesswire.com/news/home/2…
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Bain Brain Lab@BainBrainLab
Apr 14
Got some time to learn about neurogenetics Friday June 5th and in NYC?! web.cvent.com/event/2281d18d… @ColumbiaGCP @KidsAtColumbia @Columbia @columbianeurons
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Bain Brain Lab@BainBrainLab
Apr 12
For those grieving, the Child Neurology Fdn has created a space childneurologyfoundation.org…

Willow and Wind: CNF Grief Community - Child Neurology Foundation

childneurologyfoundation.org
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And another to check out from positiveexposure.org/frame/a…

Aging, Representation, Diversity and Disability - Positive Exposure

Dont Dismiss Us. Film explores disability at the intersection of [...]

positiveexposure.org
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Film explores disability at the intersection of aging, diversity, representation, and inclusion. Featuring disability rights / disability justice activist, Judith Heumann and New York Commissioner for the Mayor’s Office for People with Disabilities, Christina Curry.
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For some good history on disability.... CRIP CAMP: A DISABILITY REVOLUTION On the heels of Woodstock, a group of teen campers are inspired to join the fight for disability civil rights.
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This spirited look at grassroots activism is executive produced by President Barack Obama and Michelle Obama. youtube.com/watch?v=OFS8Spwi…
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Cerebral Palsy Awareness Day!!!! Today, March 25, is the federally recognized Cerebral Palsy (CP) Awareness Day! cprn.org/cerebral-palsy-awar… Go GENETIC CP and @ctnnb1cc !!

Cerebral Palsy Awareness Day Winners 2026 | Cerebral Palsy Research Network

The Cerebral Palsy Research Network announced is Cerebral Palsy Awareness Day winners for its annual CP Awareness Photo Contest.

cprn.org
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In February, we began accepting submissions in four categories that we thought were important to represent our community: > Adults at work, volunteering, enjoying day programming > Diversity and inclusion representation > Freestyle > Genetic CP
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