@lbhmana
Such a great day of advocacy and research presentations, but the highlight was running into @lbhmana and hearing her talk about all the amazing things the @cacna1a is doing! So excited to continue our relationship and research in my lab! ❤️View quoted post on X
👀Are you at @AAPOSeye #AAPOS2023? Stop by our booth with @MalanSyndrome to learn more about the eye movement disorders that are some of the earliest markers of #CACNA1A. 55% of our Nat History Study participants report eye disorders such as paroxysmal tonic upgaze and nystagmus.View quoted post on X
We are thrilled to be working w/ patient advocates from the #CACNA1C, #CACNA1D, #CACNA1E, #CACNA1F, #CACNA1H and #CACNA1S communities on the Voltage-Gated Calcium Channel Collective (@TheVGCCC). We have already seen a lot of excitement from researchers on this collaboration.View quoted post on X
Awesome news for the rare disease community, Amazing human, #relentless passionate advocate for all families. Dr. Chung is teeming with empathy, passion, innovation, & love for her patients. A remarkable leader & pillar of community @KIF1A @BostonChildrens childrenshospital.org/newsroom/news-…View quoted post on X
Thank you to @EinsteinMed for highlighting these fearless #RareDisease moms and their incredible work as patient advocates, including our own CoFounder & President @lbhmana! #CACNA1AView quoted post on X
