Living With NF

Let’s Learn More About NF & Miles4MJ

MJ & Marty Spreading the Word About NF

My son and myself have NF 1. I was 32 when I was diagnosed with NF and it has been a very educational eight years. It has been well over three years since my last surgery (no more cane) and over two years since my son’s. It seems like that with every three steps forward I take two steps back, but thats still progress. It is very hard for me because the people that I work with and see on a daily basis do not understand what I am going through because I have no outward signs of NF, but with hundreds of tumors still suffer from side effects. It feels like they think that I’m just over weight and lazy. I have been fighting a foot injury due to neuropathy from NF since July. Finally no more cast and out of the boot, I’m ready for rehab. I look forward to getting back on my bike and maybe joining my wife with the NF Endurance Team.

If you are unfamiliar with NF please go to CTF.org , or NFendurance.org. If NF has touched you I would like to know how it has affected your life in anyway. Please feel free to message me with your story. My family’s goal is to not only raise money to find a cure but raise awareness about NF. For a very common disorder, no one knows about it. My best friend and and God Father of my son MJ, Morrie Ledwith, started Miles for MJ in 2009 when he joined the NF Endurance team and ran his first 1/2 Marathon in the Philadelphia Rock N’ Roll 1/2 Marathon. In 2010 my wife Kris joined the team and ran her first in the Philly 1/2 Marathon. This year we are expanding to our own 5k and various other events to raise awareness and money for NF. Follow us on Miles4mj.com and on our Facebook Group : Miles For MJ or Twitter @MilesForMJ.

I hope to see you all at the Philadelphia Union Season KickOff Party at Kildare’s in Manayunk!  We will be raffling off signed UNION gear to raise money for Miles4MJ. 

DOOP,

Marty W

Miles4MJ - 5K

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About Section133

A Group for Supporters of the Philadelphia Union in PPL Park section 133. Our Purpose is to Defend Section 133 from the AWAY Supporters of ALL other MLS Clubs.
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2 Responses to Living With NF

  1. Joe Gunn says:

    Great blog entry Marty! Thanks to JeffreyM for posting it too. I just talked to Morrie on the phone today and didn’t realize he was the one who started Miles for MJ. Keep up the great work!

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