As many of you may or may not know, both of us are planning on RUNNING the Philadelphia ½ marathon on September 16th. Why, you ask? For two very special and important reasons: our NF heroes, Cullen Mitchell and Ari Kendra.

Cullen and Ari both have a disorder called Neurofibromatosis.

What is NF? NF is a genetic disorder whose hallmark manifestation are tumors that grow throughout the body with no rhyme or reason. Primarily these tumors grow on the nerve sheathes. NF can also lead to blindness, deafness, and curvature of the spine, along with learning disabilities, psychological disorders, and high blood pressure. NF occurs in more than one in 3,000 births and is more common than Cystic Fibrosis, hereditary Muscular Dystrophy, and Huntington’s Disease combined. Currently, there are no effective treatments and NO CURE for NF.

Let us tell you a little bit about our NF Heros

Cullen
Cullen is 4 ½ years old who loves to read and play with Spiderman, Batman and LOVES The Beatles. He loves to hang out with his big brother Evan. Cullen has more tumors than his big brother has freckles. Specifically, a brain tumor located behind his left eye (optic nerve glioma), one in his chest (para spinal tumor), a few small plexiform tumors in his neck, many neurofibromas (small benign tumors) in his head, neck and spine. Cullen also has some delays and may have a nonverbal learning disability, sensory processing difficulties and psychological issues.

For the past year he has endured numerous tests, feeding programs, and IVs, as well as visits to specialists, and occupational therapists, and psychologists.

Ari
Arianna Kendra is 12 years old, and her NF has caused scoliosis (a curvature of the spine). Ari has had fourteen surgeries in the past six years with the final full spinal fusion surgery last August at the Shriner’s Hospital in Philadelphia.

There is still NO CURE for NF, So we need your help. The NF Marathon Team is committed to raising money to help fund a cure. This is an exciting time in NF research as there are many new drug therapies in progress. Those NF puzzle pieces are much closer to fitting together. You can read more about how the Children's Tumor Foundation funds this research and functions as the catalyst for NF Research worldwide at www.ctf.org

It is realistic that in Cullen’s and Ari’s lifetime there could be at the very least a drug therapy that could help reduce and possibly stop tumor growth. Donate today to help us reach our goal. Cullen and Ari and kids like them will be forever grateful. You can take pride in knowing that your dollars helped impact a child’s future. Again, please DONATE TODAY and of course forward this website to everyone in your address book.

To donate to our fund you can go back to the top of this page or you can donate by mail. If you choose to mail in your donation please send it to:

Children's Tumor Foundation
95 Pine Street, 16th
New York, NY 10269-0741
Please make checks out Children's Tumor Foundation

Don't forget to write our ID# PH-3363-07 on your check!! CURE NF-pass it on!!! If you would like to keep up on Cullen's progress, please click on this link:

Cullen's Caring Bridge

Thank you, Wendy Levine and Emily Clinch