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Thursday, July 18, 2013

Golf Tourney Help?

I've been a golfer longer than I've been a special needs mom.  Longer than I've been a mom, actually.  Longer than I've even been a wife.  I love golf.  After life handed me a couple of really good reasons to raise money for good causes, I've longed to link two of the things I spend most of my time on:  golfing and raising money to find a cure for my twins.  As it happens, cures for neuromuscular disease aren't prancing themselves to our doorstep--and I want to raise some money so that can happen.

Does anyone have experience holding a charity golf tournament?  I’m considering adding a golf tourney to our fundraising schedule next year, but am trying to get a handle on how much work it will be and who can help me.  

I have questions like what are the best ways to get hole sponsorships?  How does one balance the desire for cool prizes and swag bags while making the charity a priority and keeping overhead as low as possible?  Do morning tournaments that end with lunch tend to make more or less than afternoon tournaments that end with dinner?  What things can I ask a golf course to include in the contract that are not monetary in nature but will make my life easier as the organizer?  Does anyone have experience with activities on the side to raise money on the day-of, aside from selling mulligans and holding a raffle?  I don't have any celebrities lined up to play or to emcee--how big of a problem is this, or what can I do to appeal to someone?

I am lucky enough to already have resources to provide signage, create a logo and help with PR, but there’s so much left that I need help with.  I have so many questions but a massive desire to do this.  Talk to me, people!

These are old prototype logos from years ago when I dreamed up this overwhelming event.  I like them, but we'd have to change the colors to purple and orange!
Side note:   this event will benefit Families of SMA and I know that others in our SMA community have held fundraiser golf tourneys, but I’d love to hear from others, too.

Monday, June 24, 2013

Bike for a Cure!

We are thrilled to announce a new annual fundraiser event to benefit our Arizona Chapter of Families of SMA--the board of which I am an officer, thankyouverymuch.  This event is new and different:  a bike trail ride up north in Flagstaff, AZ this September. 

We are so excited for this, and if you have a bike and forty-five bones, think about registering!  I want to see a huge turnout at this event so click this link and share, please!

Saturday, June 8, 2013

Fore. (ish.)

This kid has too much of everything.  I tell him no when he asks for anything and everything.  Except baseball bats and golf clubs.  Heaven help me if he thinks to ask me for double barreled whiskey, or a Porsche.

This is his latest model (simulated RBZ Stage 2, flex shaft, 3.3 degrees approximately).

Saturday, June 1, 2013

Last Days of Kindergarten 2013

Kyle had a blast during the final week of kindergarten.  His favorite day was Water Day, but the evening of the kindergarten musical show was pretty special too!

Wackadoo Zoo.  "Practice Makes Perfect"  (Kyle is on the far right.)

Protecting the electrical components on his wheelchair from the water wasn't as hard as we thought it would be.

Kyle's former physical therapist heard about water day and made sure he had a squirt gun (bottle, really) that he could use.  You can only see the fun in this photo, but what you can't see is a cord leading from the green spray bottle to a big red button.  He would stalk his target through the playground, set up his spray bottle, and then BAM keep pressing on that big red button while his target (a teacher or other adult, usually!) got soaked while they looked around for the culprit!  Such fun!

Kyle enjoyed all of this without his sidekick, Lauren.  She missed the last two weeks of the school year due to an upper respiratory infection which resulted in pneumonia.  Four days in the ICU cleared things up, but nothing makes up for having missed the last days with her friends and classmates.  She very much loves going to school and she was looking forward to their Wackadoo Zoo musical and water day.  Instead, she was doing this:

Happily, she is home now and resting back up for a road trip to Disneyland and our annual Families of SMA conference!

Friday, April 19, 2013

Kyle's Make A Wish - Coming Next Weekend to a Ballpark Near You!

Hello, friends!

Clearly I have been remiss in my obligation of keeping  you up with my family’s goings on over here on ‘Bahamas’.  I wish I had the time to keep up with things here AND keep up with posting things over at EverydayChildhood, but somehow I don’t have time for even real-life obligations and I’m still only getting an average of five hours sleep at night.  I could use a lesson in balancing.  But then the lesson would probably be, like, a webinar and I would prepay for it and put it on my calendar and then be sitting in the Starbucks drive thru waiting on my order of a venti caffeine mainline drip on my way to a rare girlfriend lunch date before I realized that the webinar is half over.

But this post is not about me.  Oh no.

Kyle has waited a year for his Make A Wish.  He has been very patient.  His Wish was “to be a real Dbacks baseball player,” and the Dbacks surprised him this week with the news that his Wish will be granted next week.

For our Phoenix area friends:  Kyle’s Wish will take place over the weekend of April 27-28, 2013 (next weekend).  It will culminate in a Sunday afternoon at Chase Field, when he will spend a bit of time on field and the rest of the time with his family behind home plate (sweet seats!).  I don’t know that he will be invited to participate in any special activities or be publicly acknowledged during this game, but either way you don’t want to miss witnessing this once-in-a-lifetime opportunity.  PLEASE nab a ticket and join us at this game to watch Kyle have his one true Wish granted!

Incidentally, that day is also a Parkinson’s Disease/Muhammad Ali Center fundraiser.  Check out THIS LINK to find discounted tickets for this game (Colorado Rockies @ Dbacks) and help Diamondbacks Charities support the endeavors at St. Joe’s/Barrows/Mohammad Ali Center.  Kyle’s grandpa was diagnosed with Parkinson’s years ago, and the timing of their Dbacks fundraiser couldn’t be more perfect!

Thursday, February 21, 2013

Muscle Walk 2013

A disease that for most of my life I didn't even know existed--much less did I know I was a genetic carrier for--has dominated the entire month of February for my family.  Muscular Dystrophy dominates all the months for those affected by it, of course, but February has been a particularly rough month at our house:
a $1,000 ambulance ride
a $60,000 hospital stay
+$10,000 worth of prescriptions--just a month's worth
& $20,000 worth of permanent home health equipment

Just in the span of three weeks.  All for one bright kindergartner who has missed a month of school, stopped breathing, endured painful, confusing and scary medical procedures so that she could be kept alive--and she never lost her smile.  Her parents and caregivers lost our smiles a few times though--the stress levels reached when coordinating and providing the care of a medically fragile child can fly off the charts.

Given that the monthly premiums for our health insurance are a couple hundred bucks and not tens of thousands of dollars, I guarantee that everyone in this country is paying for her care to some slight degree.  And she is just one of two people in my household who have spinal muscular atrophy--and those two are just two of thousands of children and young adults who power through SMA (a type of muscular dystrophy) every day.  Imagine these costs multiplied by the thousands of people with muscular dystrophy, every year.  Does it sound to anyone else like it would be cheaper and more advantageous to all of us to simply cure it?

SMA/muscular dystrophy is not a disease of choice or vice, or the consequence of making poor life choices (not that that should matter--my point is that you have no control over a diagnosis of muscular dystrophy). It does not discriminate by income level, ethnicity, or continent.  And it is not cured cheaply.  Our family has recruited a group of friends and family called Double Trouble for this year's MDA fundraising Muscle Walk in Tempe but we still need your help to reach our fundraising goal of $5,000.  Wish to help?  Click here.

The Muscular Dystrophy Association is a 501(c)3 non-profit committed to finding treatments and cures for neuromuscular disease.

-There are 43 types of muscular dystrophy, including mitochondrial myopathy and ALS (Lou Gherig disease) which also fall under the MDA umbrella and for which the MDA funded research seeks cures and treatments.

-Since 1950, the annual MDA telethon has raised 2 billion dollars for the fight against muscle disease.
-The MDA spends $70 per minute on clinical and lab research.
-The MDA spends 77 cents of every dollar on research programs and patient and family services.

-The MDA provides moral and financial support, local support networks, and flu shots for MDA families in over 200 regions within the US--and their influence extends worldwide in terms of research opportunities.
-MDA summer camp is a week freedom at a barrier-free, wheelchair-accessible camp for children ages 6-17 with MD and spends $800 per kid to attend.  The twins will be old enough to start attending in June 2014!

I cannot overstate how important the MDA is to our family.  Please consider helping our cause.  We want to see a cure for MD in our lifetime, and this is one of the best ways to do it.

Thank you.