We are proud of our 3x Ironman 70.3 Inspiration!

Team Burns set off on an end of the summer adventure this weekend to watch Jim complete the Steelhead Ironman 70.3 in Benton Harbor, Michigan.  After the busy summer we had, we missed out on prime (and affordable) rental properties in Michigan so opted for the RV route.  Jim has been talking about taking a cross-country road trip since foooor…evvvveerr and succeeded in getting the kids to jump on the band wagon a few years back so this was a perfect opportunity to test out the waters, rent the RV for the first time and rely on God’s beautiful nature for entertainment!   The kids were shocked when Dad surprised them but giddy on the 2 hour ride. 

The VACA...
We had our first experience with a KOA Campground and figured that we made the right choice in doing the RV thing when we got campground #56 (Jim’s lucky number).  Fortunately, Jim brought a small set of tools which came in handy immediately as we parked the RV and the bathroom door was inadvertently locked and shut.  Jim then hooked up our water and electric and we proceed to cook grilled cheese on the cutest little stove ever.  Friday we headed over to St. Joe’s  to check out the area, make a stop at the Discovery Kids Adventure Museum, ride the lovely carousel and the inevitable stop at WalMart we headed back, spent an hour trying to get our water hose connected (we learned that a little muriatic acid can fix the treads on the hose connection…who knew?) and then finally got to dinner and our mini campout of hot dogs, veggie burgers and s’mores.  Thank Heavens for the Canadian boy scout camping next to us that helped us with our minor fire issue that evening!  On Saturday, we met some good friends and their boys for a day at the beach - what started out as a chilly 55 degree morning, turned into a beautiful day that went way to fast, but it always does when you're hanging out with friends.  We got home and "saved" a tortoise from it's demise against a size 13 shoe right outside our RV and officially "adopted" our little guy, whom the kids (coincendatally) named Benton.


Discovery Kids Zone

Bon fire



The kids and Benton, the tortoise




Charlie, Owen, Cali, Dean, Evie & Luke



One of my favorite parts of the few days before we went away was after Jim took over planning and renting the RV, he did everything he could to make sure our race day went as smoothly as possible.  Anyone that has done a race, particularly a triathalon, knows the business and logistics that are involved with getting the packet at the expo, parking, setting up the transitions and then logistically for the spectators trying to “find” your athlete.  Since the transition area closed  super early compared to Jim’s race time, he wanted to make sure we were close enough so that the kids could sleep in the RV while he set everything up race morning.  Thanks to the Boy Scout troop 623 and their stellar parking skills and organization, they agreed to let Jim park the RV Sat. morning through Race Day Sunday.  Here’s my favorite part, in Jim’s words: “ This is going to be FANTASTIC!  We will park 5 minutes from the beach the day before so you guys can keep sleeping when I set everything up and then you’re right there on race day if you need to go back!  Only one little issue…we won’t have water or electricity that day because we’ll be in a parking lot.”  Hmmm…umm, ok…wasn’t ready for that one but luckily the RV did have a generator and water pump so we survived (except for the gray water backup…but that’s a story for another time)!

The RACE...
So, Race Day rocked.  1.2 miles in the 67 degree Lake Michigan water in 35 min and 27 seconds.  56 beautifully fast miles on the bike in 2 hours 59 min and 55 seconds and 13.1 hot, hilly miles through Jean Klock park.  Jim looked like one of the pro’s, never winded (or at least never showing it), always a smile and attempted hi-fives to his cheering crew through to the very end.  His goal was a 6 hour race.  His finish times (including transition time) was 5:58.03.  A third 70.3 half-ironman medal to add to the growing collection and a burning desire to sign up for the full.  Yikes? 140.6?   Will keep you posted…can our awesome spectating crew handle a full Ironman??? 



On the way to the race



Swim



Bike




Run



Finish!



#1 Fans!



Now, I’m off now to convince Jim that our camping and RV trip is over and he can change out of the grey sweats and the wife beater :)

Thanks for the prayers, support and well wishes...next up...the Chicago Marathon in October...stay tuned...

2012 Steelhead 70.3 Shutterfly album

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.

Love,
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.

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
http://www.eatpraydean.com/

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.

Yes! Yes! Yes! Phase 3 of VX-809 & Kalydeco

Yes!  Such exciting and positive news announced last week about the clinical trials that are going on for Dean's mutation.

Here is the link to the article and I'll summarize the excitement:

A little science to explain what is going on...Cystic fibrosis is caused by the mutation to the CFTR gene which hinders the transfer of water and salt across cells affecting both the digestive and respiratory systems.  To manage the digestive system properly, Dean takes pancreatic enzymes before snacks, meals and milk since his pancreas doesn't produce the enzymens needed to digest fat.  On the respiratory side, oatmeal-like mucus is produced in the mucus producing organs and since last August, we've been giving Dean daily respiratory treatments to prevent a buildup of mucus in his lungs as well as thin any mucus that is making a home in his lungs.  We do this to help him breathe easier and because bacteria like to breed in warm, sticky environments and we're trying to prevent the bacteria from causing any damage to his lungs.  So, back in January, the FDA granted approval for Kalydeco, which is the first drug for CF that doesn't treat the symptoms but rather treats the disease by targeting the CFTR gene by helping to open the cell "gates" to allow better transport of ions across cell membranes.  Dean's issue though is two fold.  Not only do the cell gates not open but the protein can't even get close enough to the cell surface to get out!  So, the Cystic Fibrosis Foundation partnered with Vertex and developed a drug (now called VX-809) that they intend use to get the CFTR protein to the cell surface, where Kalydeco can then work it's magic, open the gate and allow for the correct flow of ions.  On Thursday, final results from the phase 2 clinical trial of the combination of these drugs were released which showed significant improved in lung function for patients that had the same mutation that Dean has.  Lung function is measured by how much air can be expelled from the lungs in 1 second.  Although Dean is too young to get measured for this now, these trials in CFers 18+ with the same set of mutations showed very promising results.  So, the next step is the pivotal phase 3 trial which will be the mose rigorous evaluation of the safety and efficacy of the combination of these 2 drugs in patients who have the double deltaF508 (in preparation for another FDA filing).

We are beyond hopeful and prayerful that God guides these scientists to continue making the future look bright for our son and so many others with this disease.  We are so thankful for all of your support and wanted to explain what $75million of research dollars can do for one little man and 30,000 other people in the United States alone.  It's the passion of the people that care so much to do everything to help us raise money that is allowing this to happen.  As a "orphan" disease, meaning one given very limited federal funding, the Cystic Fibrosis Foundation is at the mercy of private donations and the families and friends of those affected to raise money.  We truly won't stop until CF stands for Cure Found.  Thank you for helping us.  Our next fundraiser for Team Eat. Pray. Dean, Chillin' & Grillin' for a Cure is on July 14th from 3-10pm.  Please say you'll come and be a part of this amazingly huge part of our lives.  We thank God for you and for your kindness and your prayers.

With love and appreciation,
Jim & Erin

check out http://www.eatpraydean.com/ for the schedule of events on July 14th
email us at findacure@eatpraydean.com if you will join us and need a link to the evite
click here to get these posts by email

Dean 2 years old

the awesome kids that will do anything to help Dean-o

"God is not unjust; he will not forget your work and the love you have shown him as you have helped his people and continue to help them.” ~Hebrews 6:10 (NIV)

Check out the lineup - don't miss Chillin' & Grillin'

Hi Friends,

We wanted to send out a reminder about our “Chillin’ & Grillin’ for a Cure” block party fundraiser to raise money for the Cystic Fibrosis Foundation.  As you know, we are striving to raise as much money as we can in the hopes of advancing research to find a cure for our little man.  Over 90 cents of every dollar donated goes directly to fund vital research and development.  If you didn’t get a chance, log onto our website (www.eatpraydean.com) to find out more about Dean and to watch him in his very own video.

Put in on the calendar and invite your friends and family to the Block Party at our place on Saturday July 14^th from 3-10 pm where we will have a rib cook-off, basket raffles, games and activities for adults and kids!  Below is a timeline of the events that we have secured so far.

Thank you,

Jim & Erin

21831 Yellow Finch Lane

773-580-3929

July 14th Chillin' & Grillin' Schedule of Events

9:00 - Fire up the smoker and start cooking your ribs!
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 sales

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 - Bean Bag Tourney
7:30 - Final call for raffles
8:00 - Basket Raffles, 50/50 (winner need not be present), Paddle pull raffle

Kids games and activities will take place throughout the day

Time TBD:  ATA Frankfort will host some mini Tae Kwon Do sessions for kids and adults

There is still time to show off your grillin’ skills – we have 6 competitors.  Let us know by June 30^th if you’d like to join the Rib Cook-Off.  The rib cook-off portion of this event is sponsored by our friends from the Glen Ellyn Backyard BBQ Competition. Although a non-sanctioned event, this is for all teams, regardless of skill or competition experience, to compete, raise money for a great cause and either gain experience or try out new recipes and techniques.  Contestants must provide all their own equipment and bring 5 slabs of Pork Ribs (spares or baby backs) and ingredients. Charcoal and gas grills/smokers are welcome. A “boat” will be provided for each dish. Teams may arrive as early as 9:00 AM and begin cooking and setting up if you will cook your ribs here.  Rib Tasting will begin at 4 P.M. and will conclude at 6 P.M. or whenever you are out of ribs.  We will only sell 50 tickets to taste the ribs — with each tasting equal to 1 individually cut rib from each contestant. Each ticket sold will also include a vote for the best rib.

http://www.lovelylifephotogallery.com/

http://www.cff.org/

http://www.eatpraydean.com/

The winner of the Cubs/Sox raffle is...

We had an awesome weekend running the warrior dash, dancing away to a family wedding and celebrating the most important men in our lives on a special Father's Day.  We ended the weekend with Dean pulling the winner for the tickets to the Sox / Cubs game that we sold to raise money for the CFF.  We thank Karen for donating those tickets and for all of the people that supported us and purchased tickets!   Check out the video below to see who won...

Here are a few more pictures from the rest of our weekend...



Warrior Dash 2012



Congratulations on your wedding Tony & Shannon!

And a salute to the best Dad's in the world!


The world's largest Peanut in GA!



Pelican Beach in Florida 2012

Obba

Grandpa

Save the Date for the Chillin' & Grillin' for a cure Fundraiser Block Party on July 14, 2012 3-10pm.  Check out http://www.eatpraydean.com/ for details.

Save the Date for Chillin' & Grillin' and Cubs/Sox Raffle

We are trying something new this year; something more relaxed and our style.  We’re going to host a Block Party on Saturday July 14^th from 3-10 pm and we would love to have you join us as we are “Chillin’ & Grillin’ for a Cure.”  This isn’t just any block party, it is a fundraiser that we are hosting to raise money for the Cystic Fibrosis Foundation.  Along with help from many of you already, Team Eat. Pray. Dean has raised over $50,000 in the past two years.   We are striving to raise as much as we can in the hopes of advancing research to find a cure for our little man -- a cure that is truly within reach.  Log onto our website (www.eatpraydean.com) to find out more about Dean and to watch him in his very own video.

This awesome day will include a rib cook-off (entry deadline by June 30th if you're interested), basket raffles, games and activities for adults and kids.  Stop by for the day or for just a few hours – we’d love your support!  Help us plan for food by giving us your RSVP via this evite link:  http://new.evite.com/#view_invite:eid=026ANC2ZTL7RSYAS4EPBVLPPOUYR3Q

Next up...we have tickets to the June 19 7:10pm Sox/Cubs game at US Cellular that we are raffling off for $25 each.  You will win 6 seats (section 149) including parking pass!! Dean will pull the lucky winner this Sunday. Email/call us if you are interested in buying a raffle ticket.  Thank you to Karen and her hubby for graciously donating these to us!

Finally, if you missed our Great Strides thank you, you can read it here...we're still working on putting the pictures together but will have them all ready after the Block Party.  Team Eat. Pray. Dean in Maryland had their walk this past weekend and we're grateful for the crew that supported us and walked for Dean in Ellicott City, MD Great Strides.

Thanks for all of your unending support!