NF Community Comes Together: A Global Live Video Chat (Recording)

In the midst of COVID-19 outbreak, the NF Community came together for a live global video chat on Friday, March 20, 2020. After an introduction from CTF President Annette Bakker, PhD, NF experts Bruce Korf, MD, PhD, and Scott Plotkin, MD, PhD, answered questions about the coronavirus and its impact on patients with neurofibromatosis, and educational experts from within the community offered tips and resources to parents of children with NF who are home from school.

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Children’s Tumor Foundation (CTF) began as the first grassroots organization solely dedicated to finding treatments for NF. Today, CTF is a highly recognized global nonprofit foundation, the leading force in the fight to end NF, and a model for other innovative research endeavors.

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[amazingabby]

Things have changed now and we are weeks later. Is there any update? My feeling on covid...is that what we don’t know, is the scariest. Like Dr. Plotkin said, in March there was so little data, there was no way to know. But now we know that strokes are caused by covid, things are very different, in general, than things were in May. Hoping for an update like he said, as we know Covid is likely not going away. My husband who does not have NF1, (I do). Had a TIA on March 15th, back then, they didn’t even suspect covid, now two months later they believe it was caused by covid.