• ProgramsList-R4R   ProgramsList-NFE   ProgramsList-NFW   ProgramsList-CUR
  •  NF Camp                  confLogo                 forumLogo
Error
  • Error loading component: com_menus, 1

Articles

Living with NF

NF Hero Alex Owens

Alex-Owens-B"Alex was named after Alexander the Great and, like his namesake, he is a fighter. Although he doesn't stray too far from his mom or dad when there's a crowd, at home he shows no fear playing ball and wrestling with his five-year-old brother. He thinks he's invincible - and with the help of Children's Tumor Foundation research, he will be. Alex was diagnosed with NF1 in February 2013 when he was four months old. He has been raising NF awareness and inspiring our community to support the Children's Tumor Foundation ever since; charming the town with his big brown eyes and his infectious smile."

"Aside from a brain tumor scare in May 2014, Alex's symptoms have been relatively mild. He is a very happy boy despite the occasional pediatric migraine, and we think his 23 café au lait spots and the freckling under his arms are cute. As energetic as he is, Alex also enjoys his downtime. Games of "peek-a-boo" or "this little piggy" are always welcome but, by far, his favorite activity is cuddling on his parents' or grandparents' laps with a stack of books. He loves to read and it keeps him entertained for hours."

Alex-Owens-A"Alex is a kind and compassionate toddler who likes to share and show affection. Although we do not know what the future has in store for him, we are committed to helping him live a normal life while raising public awareness and funds for neurofibromatosis research. My child, like the millions worldwide who also live with NF, deserves the opportunity to live a long and pain-free life."

- Diane Owens, Alex's mother

 

Alex Button

Our NF Heroes (Emmersyn Anna ) (4)

Anna Harland Emersyn Adsit

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 Dylan Prosser

Dylan-Prosser-Featured-NF-Champion

"Eighteen years ago, Dylan was diagnosed with neurofibromatosis type 1 (NF1) and an inoperable brain tumor. It rocked our worlds, but also focused us on what is important in life - showing through words and actions, every day, that we love each other."

"There have been several ups and downs with Dylan's health since his diagnosis. Some years, there was just an annual exam and MRI. Other years, I felt like my heart was being torn from my chest as Dylan endured placement of a shunt for fluid drainage from his brain to his abdomen, double hernia surgery, port placement surgery for chemotherapy, eighteen months of chemotherapy during kindergarten and first grade, removal of a neck tumor, port removal, and a shunt revision."

"In his senior year of high school, Dylan's shunt failed and surgeons placed a temporary drain in the top of his head to stem the bleeding into his brain. A couple of days later, the temporary drain quit working. An emergency CAT scan showed it had stopped functioning because his shunt had fixed itself and started working again. The surgeon called Dylan his miracle boy because he had never before seen a shunt fail and start working again!"

"Dylan graduated from high school in 2011. Today, he volunteers at his church several times a week. He has a new plexiform tumor on the back of his head that is growing. It bothers him because it is visible, but he smiles, laughs, and never complains. Dylan is my inspiration when I experience any trial in my life. I simply look at him and know I can get through anything that comes my way!"

 Janette Watts, Dylan's mother

 

Dylan-Prosser-Button

 

 

Our NF Heroes ( Emmersyn Courtney)

CourtneyWilloughby Champion2Emersyn Adsit

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 "NF Heroes."

CTF is also fortunate to have many "NF Champions," contributors that go beyond the norm to help fight NF, regardless of their connection to neurofibromatosis.

Please click below 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 Anna Harland

Anna Harland Featured NF Champion"My name is Anna Harland and I am 20 years old. I am currently attending Tyler School of Art, part of Temple University in Philadelphia. I was diagnosed with NF1 when I was nine months old. I have a plexiform neurofibroma in my right foot and leg. I also have scoliosis which showed up when I was five. I had to wear a back brace for about five years and, in 2004, I had surgery to correct the curve of my spine. I have not had any problems with my back since. In 2011, I had another surgery, this time on my leg to try to debulk the plexiform nuerofibroma.

"There is an old Japanese legend that says if you fold 1,000 paper cranes you get a wish. I was inspired to start folding cranes when I read a book called Sadako and the Thousand Paper Cranes by Eleanor Coerr. A girl named Sadako develops leukemia due to the radiation from the bombings of Hiroshima and Nagasaki. When she heard about this legend, she began folding 1,000 paper cranes in order to make the wish that she would get better.

"In 2004, I started folding origami cranes and as of 2011 I reached my goal of making 1,000! I had so many cranes and didn't know what to do with them, so I turned them into mobiles. I now sell these mobiles on Etsy and donate half of the proceeds to the Children's Tumor Foundation. Please click here if you are interested. I still fold cranes to this day.

"My journey with NF and the adversities I have faced have made me a more compassionate person. NF has not stopped me from living my life. Artistic creativity has been a huge part of my life for as long as I can remember and I am enthusiastic about sharing my love of art, spreading awareness about neurofibromatosis, and raising money for NF research."

Anna Harland

Anna Button

 

Anna Harland Paper Cranes

Our NF Heroes (Ella + Courtney)

CourtneyWilloughby Champion2EllaKest

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 "NF Heroes."

CTF is also fortunate to have many "NF Champions," contributors that go beyond the norm to help fight NF, regardless of their connection to neurofibromatosis.

Please click below 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