"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