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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.

A Letter to My Son, From an NF Dad

on Wednesday, 06 July 2016. Posted in Blog

Dear Jack,

Blog letter to my son 3As I am writing this letter you are almost 7 years old. When you were 2 years old you were diagnosed with Neurofibromatosis Type 1, or NF1. Needless to say this came as a shock to your mother and me. You were a perfectly healthy and happy little boy but the doctor noticed that you had quite a few birthmarks and mentioned NF may be a possibility. After a couple more visits with some specialists the diagnosis was confirmed.

I spent a lot of days crying after your diagnosis. I felt guilty, like maybe something I had done had led to this. In a way, I guess I wanted it to be my fault….for there to be an explanation. At least then, I could understand this. But in the end I realized that this was just chance. It is nobody’s fault. It is just the random, messy and unpredictable nature of reproduction.

Synodos for NF2 collaborator featured on CDMRP website

on Wednesday, 29 June 2016. Posted in Blog

CDMRP features a CTF researcherA valuable collaborator on the Synodos for NF2 consortium, Dr. Vijaya Ramesh’s work was recently showcased on the Congressionally Directed Medical Research Programs (CDMRP) homepage.

This published research, which seeks to identify potential therapeutics to treat meningiomas in NF2, was supported by the Department of Defense (DOD) and an NIH R21 grant. Dr. Ramesh’s ongoing research with Synodos for NF2 is being supported by the Children’s Tumor Foundation. Click here to read the full description.

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