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Articles

Living with NF

Our NF Heroes - Manny -Ron MArk Aaron (15)

Ron Mark Aaron Manny Evans 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 larger) to Mary Vetting at mvetting@ctf.org

Our NF Heroes - Hannah - Lauren (14)

NF Champion Lauren PanellHannah Howerton 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 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 been diagnosed as 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

Contact Us

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

Phone: 212-344-6633

info@ctf.org