I never personally met Matt but have always admired his tenacity, often finishing races no matter what.
Matt passed away Saturday from complications of NF at the age of 32. I've included below the "Caring Run" email I received late last week, after Matt was admitted to the hospital with a tumor found to be inoperable.
Celebrating the capacity of the human spirit to overcome adversity
A Caring Run Request
Beyond the awareness generation and the fundraising, our NF Endurance/Marathon team plays another important role for the members who are touched in some way by neurofibromatosis. We provide a sense of family and support that is very real and very heartfelt. Beyond the physical manifestations, NF can leave a family feeling rather alone and isolated at times. With well over 1000 active members committed to enabling treatments and a cure for NF, we do all we can to eliminate that feeling for all on our team. We care, and we care at a very deep and personal level about our fellow teammates and their loved ones who are struggling.
I'd like to ask all of you to think about Matt Leibowitz this week as you run or train. Matt is a true NF Hero, and is need of our support now. He has inspired and touched literally thousands of people at the events he's participated in. One of the more common questions we get on the course from people we meet is "What's NF?" When they see Matt Leibowitz riddled with tumors and struggling with each step to the finish line, we don't get the question. . . .they know.
Just a few weeks ago Matt lost his sister Holly to complications from NF. He wasn't able to visit her in the hospital, due to being too weak to travel due to reconstructive surgery in October to his foot. Now, Matt too is in the hospital. He has a tumor in his chest that has grown significantly, and has been told it is malignant and inoperable. He is receiving daily doses of chemo and radiation and had a tracheotomy this week to make breathing easier for him.
His mantra to all of us has always been to "Never raise that white flag of surrender!" If you're getting this email, I have a feeling that those are more than just words on a page to you. So, please, lace 'em up for Matt this week! Run, pray, send positive energy his way. He and his family need our support in this most difficult time.
Director, NF Endurance/Marathon Team