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Ava Lowell - Featured NF Hero for September 2016

on Thursday, 22 September 2016. Posted in Foundation News & Events, Blog

Ava Lowell NF Hero"My seven-year-old daughter, Ava, was diagnosed with NF1 at six months old. Since then, she has not had what one would call a 'normal' childhood; at least 15 MRIs, countless doctor appointments, numerous ophthalmology tests, many NF Clinic visits, and struggles every day in school. She has optic nerve tumors, a cervical spine tumor, several plexiform tumors underneath her scalp and throughout her neck and clavicle, plus learning disabilities. To hear my daughter talk about the many tumors in her body is absolutely heartbreaking, but Ava is strong. The obstacles she has encountered and overcome have made her one of the most incredible little girls I know.

"Ava's favorite subject in school is Computer Lab, favorite book is Where, oh, where's my Underwear?, favorite movie is "Pirates of the Caribbean", and her favorite activity is swimming. Ava loves to swim; oceans, lakes, pools, hot tubs - pretty much any body of water!

Little Rock’s Dancing Stars Raise over $220,000 for NF Research and NF Camp

on Friday, 16 September 2016. Posted in Foundation News & Events, Blog

photo groupOn September 8, 2016, Arkansas celebrities showed off their dance moves as they competed for the coveted mirror ball trophy at the 9th annual ‘Dancing with Our Stars’ Gala. Months of rehearsals with local dance instructors culminated in a one-time performance that raised more than $220,000 to fund critical neurofibromatosis (NF) research, support local NF initiatives, and send teens to NF Camp.

NF NEWS Vol. III 2016 is now online

on Monday, 12 September 2016. Posted in Foundation News & Events, Blog

The Newsletter of The Children's Tumor Foundation

 

Click the above image to view online or click here to download as .pdf

Yaniry Lora - Featured NF Champion for September 2016

on Friday, 09 September 2016. Posted in Foundation News & Events, Blog

Yaniry Lora NF Champion"My name is Yaniry, I am 24 years old, and I was born with neurofibromatosis type one (NF1). All my life, I have been followed by many different kinds of doctors and I had my first surgery in 2009 to remove a large tumor from my nose. However, unfortunately, the tumor kept growing back and I had to have six more surgeries. The last one was in February of this year.

"I also have a tumor on my eyelid and I have been blind in my right eye since I was four months old. In addition, I have learning and developmental disabilities. When I was in school, everyone used to bully me and make me cry, but I persevered and graduated high school with my IEP diploma.

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.

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