No surgery, no treatment can stop it.
It’s the most common disorder you’ve probably never heard of.
U.S. Awareness of Cystic Fibrosis
U.S. Awareness of Muscular Dystrophy
U.S. Awareness of Multiple Sclerosis (MS)
U.S. Awareness of NF1
The Physical Destruction
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It shatters “normal life”
NF1 can change everything about life for those with more severe forms. Social stigma can cause many to withdraw from living the lives they would have otherwise wanted.
It is a time bomb
There is no telling when, or even if, NF1 will unleash its devastation. This can lead to years of anxiety and uncertainty not only for those suffering from NF1, but also for parents and families.
It is inescapable
Currently, there is no cure, no therapy to lessen the effects of NF1. Tumors surgically removed commonly grow back just as quickly. The lack of even minor therapies can cause many to lose hope.
your child’s hand
your child’s chest
…and the doctor tells you, “There’s nothing we can do.”
Funding Highly Focused Research
We directly fund researchers specifically focused on NF1. Because there is no gatekeeper organization or “middle man,” we have the ability and flexibility to apply funds where they can do the most good.
Building Understanding of the Entire Condition
We firmly believe that to understand NF1, it is necessary to recognize ALL of its effects: Physical and psychological, during dormant and active phases.
Unearthing Therapies for Disfiguring Neurofibromas
While rarely fatal, tumors on the skin can be psychologically devastating. We seek any therapy, surgical or otherwise, to reduce the emotional and physical harm of disfigurement.
Partnering with Proven Researchers
We partner with researchers that have a proven record of modeling NF1 and progressing existing research of the condition.
Providing a Voice
We seek to provide a powerful, focused voice to those with NF1 to share their stories and experiences.
Driving Awareness and Empathy
We seek to bring NF1 into the light and help others understand NF1. We believe awareness is essential to empathy.
Online & Mobile Donation
"Since Giorgio’s NF1 diagnosis five years ago, each doctor’s appointment resulted in more questions than answers, and a real sense of helplessness. Founding The Giorgio Foundation has given us hope that through targeted research we will allow our child and many others a life free of disfigurement.”Erin Borzellino, Co-founder, The Giorgio Foundation