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Articles

Living with NF

Our NF Heroes (Matthew + Lewis) (9)

Lewis-Edmundson NF Hero Matthew Trujillo

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 Luke Gavorcik

Luke Gavorcik Featured NF Hero"Our four-year-old son, Luke, was diagnosed with NF1 six months ago after an MRI showed he had an optic nerve glioma (a tumor on his optic nerve).

"Besides the tumor, he suffers from low muscle tone which impacts his gross and fine motor skills and he has several café au lait spots on his back.

"Luke is receiving chemotherapy on a weekly basis to try to shrink or stop the growth of the tumor on his optic nerve. Although he has suffered some side effects from the chemo, he is doing remarkably well.

"Luke receives occupational therapy (OT) and physical therapy (PT) to help correct his low muscle tone, as well as speech therapy.

"Despite all this, Luke is a very active boy who loves to play outside and could swing at the playground for hours. He is also an animal lover and spends a lot of time playing with our dog, Penny.

"We pray that someday there will be a cure for NF. Until then, we are keeping a positive attitude and looking forward to what the future holds for Luke, our hero!"

 Chris and Anne Gavorcik – Luke's Parents

Help Luke Fight NF

NF Champion Allison Page

Allison Page Featured NF Champion"My name is Allison, I am 24 years old and, and I live in Birmingham, Alabama.

"My journey with neurofibromatosis has not always been easy, but I made it through the tough times. I had a large tumor that was causing me significant pain removed in 2004, but the doctor could not get all of it out. However, I am a very resilient person and I know that God is going to make a way for me.

"People tell me all the time that they can't believe how strong I am. I just choose to focus on the positive. Yes, I am still in pain and there is still some tumor inside of me, but if it weren't for the surgery in 2004, I wouldn't be able to walk today.

"I am grateful to my friends and family for helping me through the difficult times, thankful to all those that raise money for neurofibromatosis research, and inspired by everyone else with NF who fights this disorder with me."

Allison Page

 

Allison Page Button

Our NF Heroes and Lewis

Lewis-Edmundson NF-Hero-Logan-Monteith

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 Matthew Trujillo

Matthew Trujillo Featured NF Hero"My four-year-old son Matthew was diagnosed with neurofibromatosis type1 when he was six months old. He is the first in our family to have NF and he has been a real trooper as we learn what life is like with this disorder."

"Matthew is farsighted and has worn glasses since he was one year old. He does not have any lisch nodules in his eyes or neurofibromas, but he does have many café au lait marks on his body and some learning delays. He will be starting occupational therapy this year and has been in speech therapy for three years. He works very hard during his sessions to improve his language skills. Matthew also has laryngotracheobronchomalacia, which means that breath does not flow through his airway properly."

"None of this, however, has stopped Matthew from doing anything that he loves! He is a very active boy who loves to play baseball, watch the San Francisco Giants, and hang out with his big brother. He also has an awesome imagination and is a great helper around the house."

"We are very hopeful that one day there will be a cure for NF. Until then, we take each day with a breath of fresh air and are thankful to have this amazing little guy in our life. Matthew is a blessing and a hero."

Nicole Meyers, Matthew's mother

 

Matthew Button

Our NF Heroes Logan and Matt (8)

Matt Camacho NF ChampionNF-Hero-Logan-Monteith

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