iOS app Android app


May Is Neurofibromatosis Awareness Month -- Help Spread the Word

Paul Laurent | Posted 05.17.2016 | Home
Paul Laurent

NF has so many variations and the severity and manifestations can vary greatly, even among family members. Sometimes the manifestations of NF are invisible, and with many with NF, you might not know someone has it, unless you know what to look for.

'Bubble Boy' Finally Comfortable In His Own Skin

The Huffington Post | David Moye | Posted 04.13.2015 | Home

It took a performance in a freak show for Bob Heslip to truly feel normal. Heslip, 50, suffers from an extreme case of Neurofibromatosis type 1 (NF...

Reflections on Political Courage and a Note of Deep Thanks

Paul Laurent | Posted 02.04.2015 | Home
Paul Laurent

Because of Senator Harkin's willingness to step up and be the sponsor, the research that has gone into NF over that 20 year span since 1995 is tangible and promising.

Raise Awareness and Ease the Stigma Around Neurofibromatosis

Paul Laurent | Posted 07.22.2014 | Home
Paul Laurent

NF is short for neurofibromatosis, which is a genetic disorder that affects 1 in 2,500 births and causes uncontrolled tumor growth anywhere on or in the body.

Putting Faces To A Cause Gave My Fundraising A Boost

Sarah Coulam | Posted 04.27.2014 | Home
Sarah Coulam

I dedicated the last 99 days of my training to a different individual with NF. Through Facebook I highlighted 99 different heroes over the course of 99 days. I shared stories and photos of these kids and their families, along with a link to my donation page. I would also tag the parents so they would share my post with their friends. In the end, I raised more than $13,000 for research.

Don't Take it for Granted

Chad Leathers | Posted 04.26.2014 | Home
Chad Leathers

Those whispered words echoed through the hospital room, nearly muffling the endless beeps of monitoring equipment.


Dr. Gregory Jantz, Ph.D. | Posted 01.25.2014 | Home
Dr. Gregory Jantz, Ph.D.

The pictures over the past two weeks are shocking. In one, the man's face appears concave instead of convex; the eyebrows are discernible, as is the bottom lip, but everything in between that should be there isn't.

Pope Kissed Disfigured Man Whose Own Father Won't Even Hug Him

Posted 11.22.2013 | Home

Vinicio Riva will never forget the moment he met Pope Francis, and neither will the rest of us, as the moving image of the pontiff embracing Riva touc...

WATCH: 'Girl Without A Face' Proves She Has A Heart And Plenty Of Guts

The Huffington Post | David Moye | Posted 11.14.2013 | Home

Sarah Atwell, 17, of Windsor, Canada, has a form of neurofibromatosis that has caused facial disfigurement since she was eight months old. Her stor...

Amazing Little Girl Helps Homeless On Way To Chemo Every Week

Posted 03.05.2013 | Home

Ella Wilson makes a special stop on her way to chemotherapy every Thursday. The 6-year-old who has neurofibromatosis, a genetic disorder in which n...

LOOK: The World's Largest Underwear Race!

The Huffington Post | Brandon Wetherbee | Posted 02.05.2013 | DC

This Saturday, 8,000 runners around the world will raise money for The Children's Tumor Foundation. And they'll be in their underwear. Chad Leather...

'My Giant Face Tumor': Ed Port Says Children See Him As A Monster

Posted 10.18.2012 | Home

Ed Port was 39 at the time of filming for "My Giant Face Tumor" on TLC. Now 42, he still suffers from Type 2 Neurofibromatosis, a disease which can le...

'Bubble Skin Man' Diagnosed At Last; Weighing Options

Huffington Post | David Moye | Posted 08.19.2013 | Home

Chandra Wisnu, the Indonesian man known as the "Bubble Skin Man," has spent the last 25 years trying to find a cure for the bizarre condition that cau...

'Man With The 200lb Tumor' Undergoes Risky Surgery

Posted 06.07.2012 | Home

Nguyen Duy Hai suffers from a rare form of neurofibromatosis, and coming from a remote region of Vietnam, he has struggled to manage his illness, whic...

Tebow Takes Girl, 10, With Tumor Condition On Date Fit For Princess

Posted 06.14.2012 | Home

When 10-year-old Presli Collins got the call that she would go on the first date of her life with Tim Tebow, she was able to put her medical nightmare...

Hockey Team Buys Superfan, 11, A New House

Posted 06.14.2011 | Home

When the Albany River Rats packed up their pucks and sticks to move to Charlotte, N.C., dedicated 11-year-old fan Zach Bennett told his parents he wan...