• ProgramsList-R4R ProgramsList-NFE ProgramsList-NFW ProgramsList-CUR
  •  NF Camp                  confLogo                 forumLogo

Articles

Living with NF

NF Champion Lauren Pannel

NF Champion Lauren Panell"My name is Lauren, I'm from the Washington D.C. area, and when I was three years old I was diagnosed with NF1.

"Neurofibromatosis has made school a challenge. I was always a pretty good student but I had difficulty with upper level math in high school. I was diagnosed with a learning disability and an executive functioning disorder in my junior year. However, I was lucky; I basically had a private tutor at my house all the time - my mom!

"I am now 22 and a senior at Davis and Elkins College in West Virginia. I will be graduating in December 2015 with a B.A. in Child and Family Studies. I hope to become an in-home ABA (Applied Behavior Analysis) Therapist for children on the autism spectrum, or a Child Life Specialist in the pediatric unit of a hospital.

"When I'm not studying, I like to spend time with my family and boyfriend, look at Pinterest, read (my favorite book is Phoenix Rising by Karen Hesse), and watch movies (especially "The Hunger Games").

"NF has made me a stronger person, both emotionally and mentally. I look at what I've accomplished thus far and am really proud of myself. It can be tough sometimes, but I know that I was born with the genetic mutation that causes NF for a reason, and I believe it has led me to pursue my dream of working with special needs children."

Lauren Panell, Catharpin, VA

 

Lauren Panell Button

Our NF Heroes - Braxton - Meg (13)

NF Champion Meg KingBraxton Batties NF Hero

The Children's Tumor Foundation is inspired and encouraged by those that face neurofibromatosis with resilience, fortitude, and bravery every day. In honor of their strength and courage, the Foundation refers to people who live with this disorder as either "NF Heroes" or "NF Champions."

Please click on the photos to read their stories and view their profiles.

nominate-button2
To nominate your NF Hero or Champion, please send a brief story along with a picture (1mb or smaller) to Mary Vetting at mvetting@ctf.org

NF Hero Hannah Howerton

HannahHowertonFeaturedNFHeroPhoto2"My 15-year-old sister, Hannah, is my hero. She has NF1 and has been through so much. She wears leg braces every night and has had surgery on both legs because her Achilles heels impede her walking and cause her intense pain. She has a tumor on her spine and recently went to the ER due to a grapefruit sized growth on her upper thigh that appeared out of nowhere. Devastatingly, it has turned out to be cancerous and she begins chemotherapy soon.

"Never in her life has Hannah used NF as an excuse for anything. She is the bravest person I have ever met and I admire her strength. She is such a happy person; she keeps a smile on our faces no matter the circumstances.

"Hannah loves hanging out with her twin sister, Heidi, (who does not have NF), playing video games, watching the movie 'Ironman', and collecting stuffed animal monkeys. She even brought one of them to Mott Children's Hospital when she was admitted for leg surgery and the nurses put a cast on the monkey too, which she loved. In school, her favorite subject is English and she enjoys being a part of the Robotics Team. Also, from the time she was very young, Hannah has been a devoted believer in God. In fact, whenever we visit bookstores, she always buys a bible.

"She is just such an incredible girl and I love her so much!"

Ashley George, Hannah's sister

 

Hannah Howerton

Our NF Heroes - Callum - Railyn (12)

Railyn Norton NF ChampionCallum Milligan NF Hero

The Children's Tumor Foundation is inspired and encouraged by those that face neurofibromatosis with resilience, fortitude, and bravery every day. In honor of their strength and courage, the Foundation refers to people who live with this disorder as either "NF Heroes" or "NF Champions."

Please click on the photos to read their stories and view their profiles.

nominate-button2
To nominate your NF Hero or Champion, please send a brief story along with a picture (1mb or smaller) to Mary Vetting at mvetting@ctf.org

NF Champion Meg King

Meg King"I met my wife, Meg, in college at Mississippi State University in the fall of 2000. We hit it off and I knew she was the girl for me. We graduated in 2002, I went to work while she pursued a graduate degree, and we were engaged later that year. Everything was going great!

"Then, in late 2003, she was diagnosed with NF2 and bilateral acoustic neuromas. She had a craniotomy a month later for the right tumor which caused facial paralysis and deafness in one ear. A year later, she had stereotactic radiation on the left side tumor.

"Meg taught school for three years. Then, in 2007, she decided to study physical therapy. In 2010, Meg graduated from PT school and gave us the most wonderful gift in the world, our son Will.

"Meg is the Director of both the Physical Therapist Assistant Program and the Physical Rehabilitation Program at our local hospital, as well as an awesome mom to our son and an incredible wife.

"She is hands down my hero. She battles the biyearly MRIs, doctor appointments, needles, deafness, headaches, and balance problems with aplomb. Regardless of her difficulties in association with NF, she always finds time to be a parent, a therapist to others, and a loving wife.

"What a strong woman I married! I'm glad I have a hero on my side!"

-- Jason King, Meg's husband

 

Meg Button

NF Hero Braxton Battiest

Braxton Battiest Featured NF Hero"Braxton is two years old and was born with NF1. I also have NF as does my mother, grandmother, and one of my brothers. Neurofibromatosis causes Braxton to have seizures and social anxiety, but otherwise he's an active, smart, happy, little boy.

"Braxton enjoys playing with his Thomas the Train toys and going to his grandmother's house, and his favorite colors are red and orange.

"We battle NF as a family and join the Children's Tumor Foundation, and all those who have neurofibromatosis, in looking forward to the day when this disorder no longer exists."

 -- Desiree Tull, Braxton's mother

 

 

Braxton Battiest Button

Contact Us

Children's Tumor Foundation
120 Wall Street, 16th Floor
New York, NY 10005-3904

Phone: 212-344-6633

info@ctf.org