NF Endurance

Throughout this past year, I have had the honor of racing and raising funds for the Children’s Tumor Foundations’ NF Endurance program. So far, I have raised over $1000 for the charity, and in return, I get to run races! This year, I ran the Rock ‘n’ Roll St. Louis Marathon in honor of the foundation.

Read more below and find out how you can contribute to this wonderful cause.

From the website:

What Is NF?

Neurofibromatosis encompasses a set of distinct genetic disorders that causes tumors to grow along various types of nerves. NF can also affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.

Types Of Neurofibromatosis

Neurofibromatosis (NF) has been classified into three distinct types: NF1, NF2 and Schwannomatosis. Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities. Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom. Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients.


Working with NF Endurance has done so much to help me grow as a runner.  I’ve learned that racing does not always have to be about a new PR: it can also be an act of charity.

A lot of running motivation is limited to the runner as an individual: weight loss or maintenance, cardiovascular health, stress relief, personal confidence. What I’m finding, though, is the power of running for those who can’t.  And who know?  Maybe those kids who’ll receive treatment thanks to NF Endurance will someday be runners.

So now I turn it over to you.  You can help in a number of ways.  Within the next week I’ll be collaborating with the organization to set up some fundraising stuff.  For now…

1. If you live in the St. Charles area, you can swing my Smoothie King Cottleville to donate.  When you do, you’ll get chances to win a $20 Smoothie King gift card.  Donate $50 or more and you’ll automatically earn a $5 gift card.

2. Visit my NF Endurance personal site (up and running but still in progress) and donate there.



One thought on “NF Endurance

  1. Pingback: NF Endurance Update: The Scary Truth. « thisgirlthrives

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