NF Endurance for the Munich Marathon

Remember a few months ago, when I was raising money to run the Go!St. Louis  Half Marathon?  Here we go again, but let’s put it on steroids this time. 

The Go!St. Louis race required a total of $100.  It was a huge success, thanks to Aunt Sally, Gramma, Julie Heyen and family, Mike and Val, Joe Orf, and Sean.  I am so grateful for your help, and knowing I had your support made the race that much more enjoyable.

Now I’m going being my own entry fee needs to partner up with NF Endurance.  NF Endurance is a charity racing organization which raises funds for the Children’s Tumor Foundation.

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.

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.

Here’s the deal: on October 14th I’ll run the Munich Marathon (half or full is undecided at this point) in Germany as a representative of NF Endurance.  The foundation gets me to Germany and lets me run, and I’ll raise gobs of money for the charity.  How much, exactly?


So, a little more than the previous $100.  It’s quite an undertaking, for sure, but I am so excited.  First off, the Munich Marathon is one of my dream races.  My Aunt and Uncle live there, and it’s one of my favorite cities in the world. In fact, my Uncle will be running with me – yay!!!!




My visits there usually last a month or more, and I feel so deeply connected with the city.  I haven’t been since New Years 2010, and I can’t tell you how much I’ve longed to return.

But what I’m also really loving about this experience is the challenge to do much more than set a new PR. $2555 is a lot of money, but I’ll be able to touch so many lives. 

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.

I’m aiming to reach $2000 by my birthday, September 14. On you marks, get set, GO.


3 thoughts on “NF Endurance for the Munich Marathon

  1. Pingback: Outfit 6.12.11 {another time}

  2. Pingback: Childish « thisgirlthrives

  3. Pingback: Julie heyen | Ericjonphelps

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