Running with a Purpose: Fighting NF

This month I have asked a few people to guest post about the charities they run for in a series called Running with a Purpose.

I’ve been inspired recently by runners who support the charities they believe in through their races and training. These are noble reasons to run, and I wanted to give them a platform to tell their stories, and in turn inspire others.

This is a post by Mark Robillard, whom I had the pleasure of meeting at Mind the Ducks in May. Mark is a great guy – very funny, upbeat, and approachable. He runs for his niece, who was diagnosed with Neurofibromatosis.

Run 4 NF (Neurofibromatosis)

by Mark Robillard

It has been over ten years that my niece, Jessica Stone, was diagnosed with Neurofibromatosis Type 2 (NF2), a benign genetic disorder that causes tumors to grow throughout my central nervous system.

Jessica has had numerous surgeries over the past 10 years including the removal of the larger of the bilateral Acoustic Neuroma that was compressing her brain stem, which resulted in being completely deaf in her left ear.

Two years ago she decided to give up the rest of her hearing with the removal of the Acoustic Neuroma on the right side that had been causing intolerable head pressure. Although that surgery was considered successful, it left her completely deaf.

Another new challenge – A Cochlear Implant (C.I.). Her Cochlear Implant worked well for the first year but she started to have head pressure and noticed that she was not getting the sound that she originally was – Jessica’s tumors had returned and she needed the placement of a shunt to relieve the pressure from the brain fluid.

Jessica started Avastin treatments to shrink the tumors last May, which also included having a port placed in her chest. She had MRIs in August and it appeared that they had shrunk slightly in size. She had repeat MRIs in November and the tumors had not decreased in size but did remain stable. So for now every 3 weeks she heads off for Avastin treatments at the Johnson Cancer Center.

Jessica is thankful the Avastin does not have any side effects other than a little fatigue and an occasional bloody nose. She is in the process of setting up appointments and more MRIs with her doctors at the University Of Michigan to decide what the best treatment plan is.

Jessica has continued to keep her head held high and is totally inspired by life!

I have felt helpless over the years watching her deal with these issues, knowing there was nothing I could do to help. Then it dawned on me last year that I could also fight the fight with her.

I could use my running to help raise money for NF, Inc., who’s mission is to offer educational materials at no charge to the NF community, financial assistance to NF families for NF related medical travel, NF family camp, advocate for $16 million research dollars in D.C., offer free lectures for families and the medical community, support group meetings and NF chat sessions to discuss struggles within the lives of those with NF, and lastly – provide social events to keep the NF families connected throughout the year.

Last year (2010) I raised over $1000.00 when I ran the Fifth Third River Bank Run in Grand Rapids, MI. This year I have raised over $2000.00 for NF when I ran Mind the Ducks, a 12-hour race in Rochester, NY on May 14.

Any support/donations to the cause would be much appreciated.

You can mail donations to:

Run4NF

1275 Trillium Trail

Grand Rapids, MI

49525

Please make cheques payable to NF Inc. and note on your cheque: mind-the-ducks-12-hour

You may also donate online HERE.

Thank you!

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