a different kind of perfect

i'm a mom...on a mission...to enjoy life everyday...appreciate the little moments...try not to get so easily annoyed...raise my kids with a faith legacy that leads them to continue to be amazing people...and to make my husband feel as special as he makes me feel.

What is Cystic Fibrosis?

CF is an inherited chronic disease that affects the lungs and digestive system of about 30k children and adults in the US (70k worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that both clogs the lungs and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. [www.cff.org]

Monday, July 30, 2012

2012 Chillin' & Grillin' for a Cure Recap

Thank you...it was absolutely awesome...we netted $8,472, a startling amount for something we never thought would turn into as amazing of a day as it was.  This brings our 2012 fundraising total to $36,000!

The amount of work that went into it was mind-boggling.
The amount of time that went into it is much appreciated.
The amount of energy that was exerted before, during and after could light a small village (ok, well, maybe not really but I'm running out of ways to explain just how crazy, awesome it was)!
The love that was shown to us will keep us warm at night.
The support and all this money raised for the CFF will aid in finding that cure and adding tomorrows (just to reiterate everything that we raise goes directly to the CFF via our great strides webpage).

Thank you to everyone that helped us prepare for one of the most exciting days!  We appreciate everything from the months and months of work leading up to it, to the day of and the kindness and generosity of everyone throughout this.  The prep work and admin work to pull it all together, solicitation of goods for our raffle baskets and the fun we had pulling them all together, the food and the aggressiveness in which you tried to get things donated, the desserts, the dessert donations, the flyers, the kids band, the DJ, help with the logistics of the rib sales, the printing, the set-up, take-down, ice runs, watching the kids, shopping and cooking, cleaning, ideas, picture-taking, "bartending," serving, grilling, making popcorn, preparing and executing kids games, organzing the bag tournaments, your connections, thank you cards, counting and organzing the dough, asking your friends for help with donations of goods and $, the awareness and the time you spent with us that day.  We appreciate everything, everything, everything.  We know there are so many little things that made this run seamlessly that we didn't mention but we know we couldn't have done it without each and every one of you.

We're fighting a winning battle here, or at least we feel that way now that we have 2 years and $59,000 raised for the foundation.  It's not just the money that we're proud of though, it's the education, the awareness, the amount of people who now know what CF is, what Dean struggles with each day and how they can help make his life and so many more lives better. 

You can probably tell though why we're doing all this, why we try and plan and do what we can for him, for his big brother and for his big sisters.   It's impossible to sit back now that we have the power to make a difference not only now but in the future. 

Owen, Cali, Evie, Dean-o

There is this feeling that we have inside; the one that is just begging for people to realize that it only takes a minute to tell their friends and family about Dean and what he's fighting and how by just spreading the word, it can make all the difference in our lives.  You may not know why it's so important that we give our money to the CF Foundation, to a non-profit organization that has an operating model that has been recognized by many of the respected business publications.  Or maybe you do know. You may not know about cells, transmembrane conductance regulators, drugs that thin mucus or what a pancreas even does.  Or you may (especially if you were one of the lucky ones that got to hear us explain it a few times over the past year)!  You may or may not know that we take Dean to appointments every 3 months to culture his lungs and see a team of awesome people all dedicated to making sure every aspect of Dean's CF is being monitored.

We waited a bit to send this out as we had one of these clinic appointments for Dean at his CF Care Center where he had lab work done on his blood and his quarterly throat culture.  We're on edge for a week as the culture results come back because a positive test for a certain bacteria causes 40 additional minutes of treatments a day for 56 days.  Although inconvenient to fit in the day and extremely trying to make a 2 year old sit for 2 additional 20 minute periods, the greatest fear is the damage this bacteria causes over time to Dean's lungs.  Fortunately, Dean's culture was clear and no bad bacteria was present so we're happy to share that Dean continues to thrive and treatments remain status quo!

So, finally, thank you once more for following us and keeping us in your thoughts and prayers.  God is good and doing great things for us and within the CF Community.  Check out the picture and video slideshow of Chillin' & Grillin' for a Cure 2012 and here is a quick way to help today...

To help the CFF win a $25,000 award in the Chicago Community Champions contest (an online contest to help not-for-profit orgs raise visibility and win $ launched by Blackman Kallick Plante Moran) cast your vote for round one online at http://www.plantemoran.com/bkmerger/Pages/chicago-community-champions-rules.aspx.  You can vote as many times as you want through Aug 3rd.

Jim & Erin

P.S. - We won't email again until our next fundraising campaign so by signing up via this link you can keep up to date with Dean throughout the remainder of the year by subscribing to this blog either via a feed or email.

Tuesday, July 10, 2012

Final Reminder - Chillin' & Grillin' for a Cure Sat. 7/14 at 3pm

Dean-o at 2
The excitement here is rising!!!  We are ecstatic to welcome you to Chillin' & Grillin' for a Cure and wanted to send around one final reminder for the Block Party that we're hosting on Saturday July 14th from 3-10pm at 21831 yellow finch lane in Frankfort (60423).

Don't think of your typical block party, think BIG!  We have 8 FANTASTIC chefs geared up and ready to serve their ribs to the 50 lucky people that purchase a rib ticket.  You'll get to sample one rib from each chef and vote on your choice for the best ribs.  The lucky chef will win the prized Chillin' & Grillin' trophy!!  If ribs aren't your style, don't worry, we have good old burgers, veggie burgers and hot dogs ready for grillin' and some fantastic sides to complement. 

Aside from the food, we have over 50 spectacular baskets and items ready to raffle.  We mentioned some of them in our last email and the donations keep on coming - we guarantee there will be something for everyone.  And if you can't make it but want to get in on the raffles, send us an email or give us a call, we'll send you the list of items and put your tickets in for you!

Don't forget to bring your little ones!  The street will be closed off and there is a secure cul-de-sac where they can ride scooters or bikes in if you want to bring them along.  We'll have a jumpy (weather permitting), music by Poochamungas (a kids band) and caricatures, face painting, balloon artist by Art4Clowns, mini taekwondo sessions by ATA Frankfort and many other kids games to keep the little ones smiling.

Besides the basket raffles, we'll continue with raffles throughout the evenings (wine pull, 50/50, kids quick raffles, etc.) and we'll start the bean bag tourney as the DJs are starting and challenge your skills with some of the best we know on the S. Side!  The beer tent for those of age will be open as long as our supply lasts.  The general timeline is below and as mentioned, we're closing off the street so please plan on parking on Nebraska, Morning Dove or Blue Bird.

Thank you for all of the AMAZING help and support we've had so far and we're looking forward to celebrating with you and raising some dough to find Dean's cure.

With love and gratitude,
Jim & Erin

3:00 - Let the party begin!  Food and raffle ticket sales
3:30 - 4:00 Music for the kids by Poochamungas
4:00 - 6:00 Ribs and food served
4:00 - 6:00 - Caricature, Face Painting and Balloon Artist for the kids by Art4Clowns
6:00 - 6:30 - Music for the kids by Poochamungas
6:30 - Dessert station
7:00-10:00 - DJ
7:00 - Bean Bag Tourney
7:30 - Final call for raffles
8:00 - Basket Raffles, 50/50 (winner need not be present), Paddle pull raffle
Kids activities and games throughout the day.