Meet Our Members
What’s Your Story? We’d Love to Hear it!
Here is your opportunity to get to know our truly remarkable families and read their inspiring stories.
Carlie F. – Greeneville, TN
I will talk a little bit about my condition (Netherton syndrome). Something I’m very passionate about, which is mental health awareness and I would like to share my mental health journey pertaining my skin condition.
My skin condition called Netherton syndrome is what causes me to appear pink have dead skin cells all over that are visible and part of the reason why l have little to no hair. This condition has also caused me to be in and out of the hospital a lot, which can greatly affect my mental health.
Nethra – Karnatka, India
My parents didn’t know anything about this condition, but they gave me something even more important, love, care, and strength.
I come from a lower-middle-class farming family, where life was never easy. I studied in my village until 7th standard, and for high school, I had to move to a nearby city. There was no transport, so I stayed in a government hostel.
Lowell W. – McKeesport, PA
One of my nicknames is The Eternal Optimist. And for the most part, that is true. I am mostly optimistic; sometimes, even when it seems unreasonable. My friends say that it can actually be quite annoying. Yet, I still am. Mostly.
