Girl's Best Friend...

I first began running when I was 15 years old. Since then, running has been a perpetual part of who I am....it is where I seek shelter from the challenges of life and where I find bliss and serenity.

Through various phases of my life, running has been a constant. Like a best friend, it is always there to provide comfort and pride! I have never felt regret after a run; running has never let me down. I believe in the run because I know that no matter what I am facing, it will provide clarity and peace! 

I run to celebrate, I run to mourn. I run to forget, I run to remember, I run to relieve stress, I run to eat cookies and anything else. I run because it feels good, I run because it hurts. 

I run to help find a cure for NF! 

I may not always like to run but I will always love it and believe!

CURE NF2! Contributed with permission by: Kim G.

This is Devon, the son of a friend of mine, Kim. Devon has NF2, like myself, and he is a first generation spontaneous mutation (That means no parent or grandparent had it.) and required surgery for large meningioma at age 5. 

I immediately loved this picture when I saw it and sent a message to ask if I can use it for this project blog and she said that would be fine. :-)

"Devon also runs, he just qualified for his schools cross country team and is only 9 with some disabilities from his NF2, we are very proud of him!" - Devon's mom, Kim.

Devon, age 9- has NF2

"Making a Difference... for NF." - Contributed with permission by Julia S.

Originally posted as a "note" on Facebook.com by Julia, on March 21, 2010

Julia- I glanced through your pictures, and there were plenty of great ones of you wearing neon yellow and running for NF, but I liked this one of you, for it's unique adventure and daring look!  :)

Posted from perspective of Julia, and the part after intro by her husband, Ralph. (also mentions their daughter, Jessica- college age, I think.)

Ralph was asked to write something about me....for a friend.... not sure what this friend is up to, but here is what he wrote.

Although many are not mentioned in this note I've put you here because you were all on that initial journey, helping me out on those long runs, or the short ones.... and I thank you.....

And I apologize if I have left anyone out... heading out the door so I haven't had time to check...

How can I make a difference. What can I do that will bring about a change to the way I live with this disorder, for those suffering with this disorder and ultimately solve the genetic puzzle that is NF (and for the uninitiated that NeuroFibromatosis).

This is the short story of Julia, my wife (I guess Dave would substitute my friend) and her continuing journey of life with NF.

NF was for many years just something she and I lived with. The ticking time bomb that might never go off but frequently "fizzed" with some alarming conditions. Being genetic there is a 50/50 chance that our children would have NF. We have one child - Jessica - she also has NF. As they say in Vegas - you roll a 7 and you crap out. For us it was 1 and done. That was 1986 and very little if anything was known about NF, especially in Australia.

In 1990, we moved to the United States of America. Julia quickly found out that NF was much better understood in the USA and had very active organizations supporting those with NF and especially for funding research into a cure for NF. Throughout the 90s it was not much more than just the annual checkup for Julia & Jessica - simple stuff like head & spine MRIs to check for tumors which if detected there tend to be shall we say "life changing"

The internet comes of age in the late 90s - and Julia finds many sites dedicated to NF - but the message tended to be the same "woe is me, NF has ruined my life". Not to downplay the seriousness of the problems the disorder can cause (such as learning difficulties, fine motor skills & coordination (try catching a ball or riding a bike without them), blindness, deafness and a host of others) but for Julia it seemed that nothing was being done and she wanted to "do something".

Do something translated to running.

There's a scene in the movie Forrest Gump where Forrest says "... My momma always said you can tell a lot about a person by their shoes, where they're going, where they've been. I've worn lots of shoes, I bet if I think about it real hard I can remember my first pair of shoes..."

Well I'm here to say that Julia has worn (out) a lot of running shoes. And I mean a lot of running shoes! It was the year 2000 and Julia began training to run the Dallas White Rock marathon late in the year. Having proved to herself that she had "the stuff" to run a full marathon her next objective was to run her first marathon for NF at San Deigo in 2001. In the USA, events such as city marathons, tend to big fundraisers. This was Julia's first fundraising effort for NF and raised over $5,000. We passed the hat around to friends and their generosity was outstanding. It was in San Deigo that Julia met Steve Kendra and Bob Scold and NF marathon racing team bloomed.

San Deigo 2001 was followed by NF marathons in Chicago 2001, Alaska 2002, Vancouver 2003, Virigina Beach 2004, Nashville 2005, Las Vegas 2005, Alaska (again) 2006 & Phoenix 2007. Roughly speaking her efforts were supported by generous donations totalling in excess of $40,000 to the cause of the Childrens Tumor Foundation, dedicated to research to "Solving the NF Puzzle".

In between those marathon efforts, we were also dealt some "life challenges"

2001 - surgery for Julia for an unpronouceable tumor that needed to removed from her adrenal glands (which if not removed properly would ensure death if she were to have a general anesthetic).

2003 - Julia has a spinal tumor - major surgey on spine T2-T4

2003 - Jessica (aged 16) diagnosed with a brain stem tumor!!! That will ruin your day. Thank God for Dallas Childrens hospital

2004 - Julia pre-cancerous esophageal cancer ... another day ruiner...

As one souvenir from Julia's marathons succintly says "Can't run from NF,... can run for NF!" And run she has!

And here we are back in Australia and after a 2 year hiatus, Julia has successfully staged her first "Coastal Run for NF" raising over $2,800 for the Neurofibromatosis Association of Australia (NFAA) Inc.

Her plans are to launch this event as the "Neuro-Enduro Challenge" raising the awareness of NF in the community and supprtoing the NFAA through the generous contributions of individuals and businesses.

What can you do to make a difference. Lots of things. This has been one of them

Gettin' high (the legal kind) - By: Anne S.

I got the idea to write about this when I should have been going to sleep, last night, so around 2am, with the lights turned off, while laying in bed, I wrote this, on my cell phone.  (This is me intertwined into feelings I have about how others view my running, in general, a perspective often ignored.)  I read it again when I woke up and still liked it, so here it is...

Some say this kind of high is crazy
Some say a weedless high is wild
Many say it cannot be
And its actin' like a child

What is this high?
Yes, I say- it can be
It is rare and most don't understand
Runnin' up the hills-  it can be.

I got mud and dirt splattered
all over me and I'm sweatin'
and my heart is fast beatin'.
I have to rush to a meetin'

Who you meetin' with?
My Lord, my God, my Savior-
I like chattin' with the big guy
While I'm runnin' some more

It makes everything worldly drift away
My worries, fears, and stress
Gettin' high, runnin' through the trees
Wearin' a smile on my face

I think about Him and I know
Everything is gonna be alright,
When I trust in Him,
To make my days so bright.

Where'd it come from?
What is that feelin' high?
I told ya most people don't understand.
They think its a little white lie.

Some say I don't feel pain,
When I get high like that.
Its not a drug though.
Raw brains can do that.

People see me runnin'
Mile after mile just flies on by
Always smilin' real big-
I promise the high isn't a lie.

My 1st 70.3 Ironman - www.nfendurance.org

Just a few of the many pictures, so I posted one from each discipline- swim 1.2 miles, bike 56 miles, then run 13.1 miles... 

Poem by Holly A., May 3, 2011

NEUROFIBROMATOSIS


NF is a genetic disorder that
Enables tumors to grow like weeds.
Upon the skin-- NF1,
Ravaging the nervous system-- NF2,
Or a combination of both.
Fighting this disease
Is draining in body and spirit.
Because it's not considered cancer,
Rarely do people take notice.
Oh, if they only knew.
Malignancy isn't the worst that can happen.
Abilities lost one by one,
The painful ugly tumors on the skin,
Or going deaf and blind or becoming paralyzed.
Suffering for many years with few treatment options until death finally comes.
It needs awareness and funding for more research.
Spread the word and help us cure NF!

graphics by Sarah G. :)

Literary work #1, By: Anne S.

I started writing this in class, so I figured I'd post it here.  It's a "renga" styled poem (chain of haiku) and each set of 3 lines forms a haiku (5-7-5 syllables) and tells a snippet of a longer story, about my first 70.3 Ironman race, so I thought this would be good to get this thing started. Please contribute whatever you think is appropriate! Thank you!

Off to bed by ten.
Try to get a good night's sleep.
Leave by four AM.

Sandles, forty out.
Bundled in sweats and wetsuit.
strip down to that suit.

Goggles, cap- ready
Cannon fires a loud bang,
and the pros are off.

Brrr- it's cold- just swim!
The water is sixty-two.
Swim one-point-two miles.

Ankle slap, Head kicked.
Try to follow the bouys,
to stay on the course.

Exit water- brrrr!
Quickly strip off that wetsuit.
Barefoot. Run. T1.

Run across the grass.
Helmet, gloves, socks and shoes- GO!
Pedal fast and smooth.

Gulp some power juice.
Use Propectuem or that GU.
I need nutrients.

I see many signs
chalk written on the asphalt
insprational

no complaining here
earn your iron today
you are my hero

on and on they go
my knees wanna quit,
but my heart says GO!

Before I know it,
I am half way done with this race
keep on pedaling

Ten more miles to ride,
before I hop off this bike,
Transition is soon.

T2- I arrive at,
I change shoes at speed of light
and off I go- RUN!

Why do I do this-
some people think its insane!
Awareness I bring.

I wear bright yellow
NEUROFIBROMATOSIS
Hope to end NF

On and on I run,
through many aches and bad pains
With one goal- FINISH!

Run thirteen-point-one
I run two big loops- one done
six more miles to go

I walk a little
on only the second loop
Slowly I run now

I want to finish
And finish- I know I will
I have had some doubt

but now I know I will
Near mile twelve- I see my dad
He runs beside me

I am almost there
One mile to finish
I see the finish!

Inflatable arch
Almost magical it seems
8 hours 5 minutes

Camera everywhere,
Cameras flashing and clicking,
I feel like a star.

Volunteer approaches
to as if I am okay.
they hand me two drinks.

My fiance waits,
end of finish chute, he stands
I see him waiting

I hug him tightly,
and give him big sweaty kiss,
then we go find food!

First Post!!!!

Hi, my name is Anne and I set up this blog to use for a project for my Literary Magazine course, and I need other people to contribute to it as well.  For this blog, I am asking team members, runners, and triathletes to contribute literary works.  (i.e.- poems, short stories, photographs, etc.)  I will be posting a few things to get this going and set up links to tell Facebook friends and teammates about the new blog.

If you have an idea, don't hesitate- just post it! Thank you!

I am a member of the NF Endurance Team with the Children's Tumor Foundation, and personally have fundraised over $12,000 towards a cure in the past year, and just two days ago, completed my first 70.3 Ironman triathlon for NF Endurance, with my fiance, Steve.  (In case you don't know, a 70.3 is a 1.2 mile swim, 56 mile bike, 13.1 mile run, and if that doesn't sound tough enough... that is a "half" Ironman, so now I have a long-term goal to complete a full 140.6 Ironman, but I plan to do some more 70.3 races first.)