Retired UVA pediatrician diagnosed with ALS creates a fund to help fight it

Published: Aug. 23, 2022 at 4:54 PM EDT
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ALBEMARLE COUNTY, Va. (WVIR) - A retired pediatrician with UVA Health is working to help people battling ALS.

Jim Plews-Ogan and his family created the Hummingbird Fund after he was diagnosed with ALS.

“You have to live in hope. I live in hope, and it comes in all different forms. One of them is, yes, that I’m going to be able to help other people. Another part of it is, yes, that we can actually create legislative change. And because that will scale across everybody, increase their lifespan, etc. So yes, that’s very hopeful and it’s doable,” Plews-Ogan said.

Plews-Ogan says his 40 years of experience working as a pediatrician is helping him.

“My academic career was really devoted to caring for children with medical complexity and disability. So I got to know families that were facing really extreme challenges with their children, and all of this is completely translatable to the care of ALS. So I have a unique window, I think, into what’s necessary for excellent care for people with ALS from that background,” he said.

The Hummingbird Fund was coined after his wife.

“Hummingbirds are beautiful and resilient, nimble, and they can travel a long distance. So it seems like an apt title and image for people living with ALS,” Plews-Ogan said.

The FDA is reviewing AMX-35, which may may help slow ALS-related decline. The Hummingbird Fund is providing public testimony for the approval of that medication.

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