Tags » Neurofibromatosis

They can't just "get over it"

My son has Neurofibromatosis type 1: he can’t just ‘get over it’. He has it for life. The implications of it are unknown.
My daughter has autism: she can’t just ‘get over it’. 721 more words

Being Idle

I have never been one to be idle. I can’t sit still. I have never been able to. “You have ants in your pants” my mom would tell me. 816 more words

If Today is a Good Day...

By: Dawn Thompson

A doctor once told me, “If today is a good day, then, it’s a GOOD day!”

At the time, my four-year-old was hospitalized for acute ataxia of unknown origin. 549 more words

Floating Hospital For Children

Motorcycle Ride for Neurofibromatosis

My daughter and I rode in a charity ride supporting Neurofibromatosis (NF).  The ride was hosted by NFmidatlantic.org and the Baltimore Ramblers Motorcycle Club.

NF is the most common of the “rare” diseases.  241 more words


Young Edmonton-area boy battling serious illness receives unexpected gift from complete strangers

Watch above: A Sherwood Park mother, who has watched her son endure live-long complications from a severe neurological condition, says she’s grateful for the actions of a group of complete strangers. 487 more words


Welcome to NFCA Pittsburgh

Welcome to new client, the Neurofibromatosis Clinics Association (NFCA) of Pittsburgh, a regional, non-profit dedicated to serving people with Neurofibromatosis and their families.

We helped setup their social media presence. 70 more words

Social Media

Person of Interest: Bobby Gill

Pondering the most standout way to raise funds and awareness for the Children’s Tumor Foundation? Bobby Gill may have got you beat with DC-based, non-profit, Cupid’s Undie Run. 834 more words