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Mark Ward's Fundraiser:

2017 MTM-CNM Family Conference

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owner profile imageThank you! The Beard goes on...
September 05, 2017

Well, the 2017 MTM-CNM Family Conference was... great!  It's hard for me to describe just what this conference experience meant to the families  See more
Mark Ward

THE STORY:

I've had a beard in some form or another since I was in college (so, um, a few years now..) but as you may have noticed it has been growing lately.  I mean really growing.  Like I can tuck it in and use it as a scarf.  I didn't really set a goal to have such a glorious face blanket, it just kinda grew on me.  I guess it started back in October of 2014 when my son Will was in the ICU of Boston Children’s Hospital following an 11-hour long spinal surgery.  One of the consequences of Will's Myotubular Myopathy (MTM) is that his muscles are too weak to keep his bones straight, so over the years he had developed pretty severe scoliosis (curvature of the spine).  He wore a back brace for years, which slowed the progression, but even with that his spine ended up with a 90 degree bend.  So this surgery straightened things out quite a bit with the help of lots of titanium rods and screws.  And that's a pretty darn thought-provoking life event - to see your child going through something like that.  He was out of the ICU and back home after 6 days, which I think set some kind of record for that kind of surgery.  The kid is tough.  His muscles might be so weak that he relies on a ventilator to breathe and a wheelchair to get around, but he is tough.  Anyway, somewhere during that week, something inside me said "grow it out".  Now that I look back, it really makes no sense.  Perhaps it was the hospital-induced sleep deprivation, perhaps it was just thinking about life differently overall.  But whatever it was, I embarked upon the shaggy road I am on to this very day.

By July 2015, at the time of the 4th MTM-CNM Family Conference, the old five-hundred-o'clock shadow was coming along nicely.  As I enjoyed time with friends new and old, and was amazed by the incredible research updates, I was glad my beard could be there to experience this wonderful event with me.  (Looking back at pictures from the previous MTM-CNM Family Conference in 2013, my beard was just a relatively baby back then.  So cute.)

So now it is late 2016, and we are gearing up to head to NASHVILLE (awesome!) for the 2017 MTM-CNM Family Conference next July.  And my jowl jacket is as long and fluffy as it has ever been.  People make comments like "you look like Marx, the philosopher" (seriously, one of Will's doctors came up with that gem) and of course with Christmas around the corner I half expect little kids to start handing me their wish lists.  And I was wondering... what will it be like at the 2017 conference?  Will they mistake me for a lumberjack?  Will I achieve wizardly status?  Or will I make an impromptu decision one Saturday morning and break out the hedge trimmers?

Then it hit me... I should let you all decide.  That's right, I am putting my luscious locks literally in your hands (not literally, but it alliterated).  I am putting my beard's future up for a vote.

 

HERE'S HOW IT WORKS:

You vote by donating money right here on this page.  One dollar = 1 vote.  More dollars, more votes.  You will be doing an awesome thing by helping to make the 2017 MTM-CNM Family Conference a success.  But you will also have an opportunity to change my follicular destiny.  Just comment "SHAVE" or "SAVE" when submitting your donation.  I'll tally up the dollars and votes on the 4th of July and, provided one or the other has gained at least $1000 worth of votes, I will either Shave or Save The Beard. 

Donate early, donate often!  Get your friends to donate a couple bucks just because it is kinda crazy! THANK YOU!

DONATE

To This Fundraiser

$2,050

MONEY RAISED
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  • The Maul Family

     

  • Mom and Dad

    $100

  • Lindsay Lykens

    $25

  • Craig & Gil Lykens

    $50

  • Kim

    $10

  • The Capone's

     

  • Anonymous

    $20

  • Ivy

    $10

  • Marianne Strayton

    $100

  • Katie O

     

  • Anonymous

     

  • Anonymous

     

  • Terri, Charlie, Sydney Couto

     

  • Jessica, Alexis, Catherine & Matt

     

  • David Rinaldi

    $25

  • The Barghaan Family

    $100

  • The Gerhardt's

    $25

  • Michelle Anderson

    $10

  • Dan, Kim, B, & J

     

  • Kowalski Family

    $100

  • Roxanne Waling

    $25

  • Jen and Holger

    $25

  • Mark & Lisa Burgess

    $25

  • West Family

    $50

  • Donna Walter

    $25

  • Leding family

    $10

  • Deb and all the fellas

    $10

  • Mark Ward

    $25

  • Leslie

     

  • Timmy Stevens with Ellen & Doug Waddill

    $25

  • Patty and Tony Novotny

    $25

  • Russell & Lesley Price

     

  • Will's Mimi and PopPop

     

  • Bill & Marianne Howe

    $25

  • Wendy, Simon, Sophie and Zak Hughes

     

  • Marianne Strayton

     

  • Muttsy

    $10

  • Meghan Metzler

     

  • The Capone's

     

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103% Raised of$2,000 Goal

Fundraise for this Campaign

The Team: $15,718 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Run for Evan

Amount Raised

$4,685

Fundraiser Title

Will Ward

Amount Raised

$2,239

Fundraiser Title

Mark Ward

Amount Raised

$2,050

 

103% Raised of$2,000 Goal

Fundraiser Title

Becky and Rob Garland

Amount Raised

$2,008

Fundraiser Title

Team Gilbug

Amount Raised

$1,188

 

238% Raised of$500 Goal

Fundraiser Title

The HairMarmon Family

Amount Raised

$1,000

Fundraiser Title

Claire Hackett

Amount Raised

$600

Fundraiser Title

Reid and Paley Wood

Amount Raised

$590

 

30% Raised of$2,000 Goal

Donor Comments

The Capone's

The Capone's

2 years ago

Meghan Metzler

Meghan Metzler

2 years ago

Muttsy

Muttsy

DONATION: $10

arrrrrffff woof woof ("save the beard!") 2 years ago

Marianne Strayton

Marianne Strayton

2 years ago

Wendy, Simon, Sophie and Zak Hughes

Wendy, Simon, Sophie and Zak Hughes

Wishing you a successful conference - with love xx 2 years ago

Bill & Marianne Howe

Bill & Marianne Howe

DONATION: $25

2 years ago

Will's Mimi and PopPop

Will's Mimi and PopPop

do we get to vote again? Go Mark! "mostly shave" ;) 2 years ago

Russell & Lesley Price

Russell & Lesley Price

2 years ago

Patty and Tony Novotny

Patty and Tony Novotny

DONATION: $25

3 years ago

Timmy Stevens with Ellen & Doug Waddill

Timmy Stevens with Ellen & Doug Waddill

DONATION: $25

3 years ago