Neena Nizar is the Supervisor at the Learning and Tutoring Center South Campus for Metropolitan Community College.
She is also an advocate for those with rare diseases.
Earlier this week, Nizar was awarded the Reverend John P. Schlegel Diversity Award for Excellence and Innovation.
After her second son was born, Nizar was diagnosed with Jensen’s Metaphyseal Chondrodysplasia.
She says it’s a rare skeletal bone disorder that also affects the kidneys.
Nizar explains she started her advocacy work when she realized there wasn’t much information about the disease available to the public.
"With all the work I’ve been doing, with all the advocacy, we got a Discovery Channel documentary about the condition. We have found two other people through the advocacy efforts. I write constantly about disability on different blogs, about policies for rare disease. And because I have a rare disease myself, it’s all very personal to me. It’s firsthand information.”
Nizar says the disease only affects six people in the United States and three of them are in her family.
More information on the disease is available at TheJansensFoundation.org.