Emmie Character - Featured NF Hero for August 2016

on Wednesday, 24 August 2016. Posted in Foundation News & Events, Blog

Emmie Character Featured NF Hero"Our family's resident superhero is Emmie. We've given her the nickname 'Super Ems' as she fights neurofibromatosis type 1. Emmie was diagnosed with NF just a week shy of three months of age. At that time, the doctors told us that she has a plexiform neurofibroma on her neck as well as kyphosis (a forward rounding of the back). She's fought through two surgeries, one of which placed her in a halo brace and had her in traction for six days. She'll be fighting another battle this year as she undergoes spinal fusion surgery at the age of 21 months.



Washington Post profiles adult woman living with NF

on Thursday, 11 August 2016. Posted in Foundation News & Events, Blog

Washington Post screengrabAn incurable disease covered her face in tumors. She had to learn to like herself.
Washington Post
August 10, 2016

BALTIMORE — At first, Janet Miller knew only that she had scoliosis. And that was enough. Enough to explain why she always felt different. Why she had trouble learning to swim and ride a bike. Why she spent her 13th year in bed, after doctors operated on her spine and wrapped her in a cast that stretched from the top of her head down to one of her knees.

And it was the reason, she thought, that when she was a teenager, her mother told her, “Only someone kind would want to be with you.”

It was enough to make her want to retreat from the world during her high school and college years in Western Pennsylvania, averting eye contact and skipping social settings.

University of Alabama and CTF Host NF Symposium: Family Day on August 27

on Thursday, 11 August 2016. Posted in Foundation News & Events, Blog

NF Family Symposium 2016The University of Alabama at Birmingham and the Children's Tumor Foundation present Neurofibromatosis Symposium: Family Day 2016 on August 27.

Kristianne Hopkins - Featured NF Champion for August 2016

on Tuesday, 09 August 2016. Posted in Foundation News & Events, Blog


Kristianne Hopkins NF Champion

"My mother is a hero; not in the sense of capes or flashy outfits, but in the sense of inspiration and encouragement. My mother has been dealt a crazy hand; she and three of her six children have NF1. She's been through a lot and is an encouragement to anyone who meets her. She doesn't have laser vision, nor can she stretch to incredible lengths, but she does have super powers. She has the ability to lift thousands of spirits with a single smile. Anyone who meets her, no matter what they are going through, will feel better as soon as they talk with her. She has the power of kindness. You could be a complete stranger but you talk to my mom and she will be there for you. She has super speed as she runs to the rescue of any of her kids. To them, she is their world.


NF Camp, A Parent's Perspective

on Monday, 01 August 2016. Posted in Blog

Hayden LynchThe 2016 NF Camp season is behind us. Two weeks of outdoor adventure, late-night bonding, fun and laughter, is now but a fond [Snapchat] memory. But it’s not only the young adults living with NF who benefit from the opportunities that NF Camp provides; their entire family feels the joy from knowing their child is safe, happy, and among their peers who understand. NF Mom Kirstin wrote to NF Camp Program Manager Julie about what the experience meant to her son Hayden and their entire family:

Dear Julie,

I just wanted to take this opportunity to write to you and to explain how grateful the Lynch family is for NF Camp and the experience of a lifetime that our son had last week in Utah with you all. Man, he hasn’t stopped talking about how amazing it was, and how and what he is going to do to try and get back to it next year! Plus all the amazing friends that he made – who he is already connecting with on Snapchat and Facebook! They will be lifelong friends and people with whom he can connect with at a very deep level.

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