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A lifetime of memories made at NF Camp

on Thursday, 28 July 2016. Posted in Blog

Paige Martinez at Camp Week 1 croppedNF Camp is an annual summer camp dedicated to young adults who have been affected by neurofibromatosis. This year marks the 20th anniversary of this week-long experience for young adults ages 12 to 22. We asked a first-time camper, Paige Martinez, to share her thoughts about the adventure.

...It's hard for me to express how happy I was there. NF Camp was truly one of the greatest experiences of my life. Beforehand, I was always afraid of talking about my NF since no one around me understood the condition. But at camp, talking with my new friends and counselors felt so welcoming and comfortable that we did it every day.

Mariah Booker - Featured NF Hero for July 2016

on Monday, 25 July 2016. Posted in Foundation News & Events, Blog

 

Mariah Booker"My nine-year-old daughter, Mariah, was diagnosed with NF1 at the age of six months. She has a plexiform tumor in her cheek that affects her upper and lower gums and impacts the growth of her teeth. She had surgery to debulk the tumor, but it grew back. She also has a renal artery aneurysm, stage 2 kidney disease, and high blood pressure. In addition Mariah has learning disabilities, anxiety issues, and fine and gross motor skill delays.

"Despite all of these challenges, Mariah has a great attitude and a beautiful spirit. She loves fundraising for the Children's Tumor Foundation and traveling all over Virginia for gatherings with other NF families. She is also very involved in helping me organize the Richmond NF Walk every year.

New Adventure: A First-time NF Camper Looks Ahead

on Tuesday, 12 July 2016. Posted in Blog

Paige Martinez 1 smNF Camp is an annual summer camp dedicated to young adults who have been affected by neurofibromatosis. This year marks the 20th anniversary of this week-long experience for young adults ages 12 to 22. We asked a first-time camper, Paige Martinez, to share her thoughts about the adventure she's about to partake in.

My name is Paige Martinez. I'm from California and when I was 3 months old I was diagnosed with NF1. I'm 15 years old now but when I was in elementary school I knew another little girl with NF2. We lost touch after a few years but now I get another chance to meet a bunch of other kids with the same issues as me! Personally, I think this will be amazing and one of the best things that could happen to me.

Marquila Miller - Featured NF Champion for July 2016

on Tuesday, 12 July 2016. Posted in Foundation News & Events, Blog

Marquila Miller

"My name is Marquila, I will be 28 on July 10th, and I've been living with NF1 for over two decades. I'm from  St. Louis, MO, I have a five-year-old son, I love to dance, my favorite movie is "Transformers", and I work with special needs children.

"To be honest, I didn't know what neurofibromatosis was until I became an adult. When I was younger, I was often teased because I was different; I wore lifts on my shoes and had café au lait marks all over my body. However, overcoming that time in my life made be strong, it made me the woman that I am today. This is me, and I love the skin that I'm in."

 

Volunteer Leadership Council Awards Luncheon

on Friday, 08 July 2016. Posted in Blog

Renie VLC volunteer of the year 2016During the 2016 Volunteer Leadership Council meeting in Austin, TX, outstanding volunteers were given “superhero” awards for their continued service to the Children’s Tumor Foundation. The highlight of the ceremony was the presentation of the Volunteer of the Year Award. Annette Bakker, PhD, President and Chief Scientific Officer of the Children’s Tumor Foundation, recognized Renie Moss of Birmingham, Alabama as CTF’s Volunteer of the Year.

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Phone: 212-344-6633

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