No Child Should Fear Their Future.

Our Mission: Bring NF1 out of the darkness.

Our 2016 Documentary

A single gene.

 

Our bodies hold 25,000 genes, but one is responsible for suppressing tumor growth.  That gene is known as NF1.

When that gene fails, it unleashes uncontrollable tumor growth.

 

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

93%

U.S. Awareness of Muscular Dystrophy

92%

U.S. Awareness of Multiple Sclerosis (MS)

94%

U.S. Awareness of NF1

4%
30000
Cystic Fibrosis Cases in the US
50000
Muscular Dystrophy Cases in the US
300000
Multiple Sclerosis Cases in US
300000
NF1 Cases in the US

The Physical Destruction

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Early childhood

In early childhood, there are absolutely no outward signs of NF1.

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Pre-teen

As the child develops, NF1 begins to make its presence felt.  This begins with a few discolored spots on the skin, called cafe au lait spots.

At this point, NF1 may begin to distort spinal and bone structure to the point children are unable to play.

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Teens

When children are most emotionally vulnerable, NF1 begins to take a heavy toll.

Uncontrollable tumor growth begins on the face, skin, nerve tissue, and spine. Bone structure continues to erode.

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Adulthood

Tumor growth continues, now entering more advanced stages. Optic nerves are a common tumor location, and blindness is a common concern.

One may begin to withdraw from society and relationships as the condition progresses.

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Late adulthood

Disfiguring tumor growth extends to the entire body.

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The Emotional Destruction

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.”

Yet.

Our Mission is to advance the light of knowledge into a condition defined by darkness, fear, and the unknown.

 

This is how.

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.

Every child deserves childhood.

"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