Thank you for a super successful Great Strides walk in Reno!

A few weeks back, Aunt Karen captained a Great Strides Walk in Reno, Nevada at beautiful San Rafael Park.  The team was small in number but mighty in love for Dean and our cause.  Aunt Dor and Uncle Hank joined Aunt Karen and Uncle Rod for the 5K sporting the Team Eat. Pray. Dean shirts and raising both awareness in Reno as well as over $1,000 for CF research.  They made connections with both the CF staff and local families throughout this process.  Among all the amazing advancements happening in the CF world, we're finding some interesting CF connections within our family that is driving this team to even further increase their participation in so many ways.  It's hard not to think with all this support that we're going to kick this disease.  Thank you Aunt Karen and Dor, Uncle Rod and Hank for representing us in Reno.  Thank you to all of Aunt Karen's donors and benefactors that helped her raise money!  We truly appreciate all of the work and love that you put into helping us and Dean and could not do this without all of you.   

Great Strides Reno 2013

We continue to be blessed with a full year of fundraising activities with help from people all over.  If you got in on our July CF Madness raffle, check out the winners so far via the link below.  If you are in Frankfort, we are ecstatic that the CFF is the receipient of this years Frankfort Neighborhood Softball Challenge and looking forward to cheering on our team and all of the other amazing people that live in this great suburb!  Oberweis in Mokena is hosting a fundraiser where a percentage of the proceeds from our group will go back to us.  Frankfort Black Belt Academy is offering a donation to all those that sign up as a result of our team (just mention how you heard about them when you take a trial session).  Tommy Hayes is leading the pack fundraising for the Team CF Cycle for Life for Team Eat. Pray. Dean and we have an amazing crew of people joining us for the ride in Geneva in September.  Aunt Dor and Uncle Hank are taking the time to raise awareness to their friends in California in October by participating in a Great Strides walk and Candy is wrapping up the year for us by leading a team in Chicago's Climb for Life.  We can't stop hoping that all of your efforts will enable us to share a lifelong of dreams and memories with our little guy. 

We love you.

Jim & Erin


July: Click here for JULY CF MADNESS Winners
August 4: Frankfort Neighborhood Softball Challenge

August 8: Oberweis Fundraiser in Mokena

September 7:  Team CF Cycle for Life (Geneva, Il.)

October 26: Palm Springs, CA Great Strides

November 10: CF Climb for Life
 
Ongoing ways to help

• Try out your Tae Kwon Do skills at Frankfort Black Belt Academy who will donate back to us for every summer program enrollment
• Raise money for CF as you take on your next challenge (marathon, bike, swim, run, etc). 
• Be an organ donor

Continued thank you's to: Jason Inc, Assembled Products, Ozinga, Poochamungas, Cannonball, Cross Technology, Peace Community Preschool, Tomlinson Law Office, Frankfort Black Belt Academy, Avid Printers, Hawkinson Nissan, Hawkinson Kia, Portable John, Inc., Treasured Smiles for your support.

2013 Chillin' & Grillin' for a Cure recap and slideshow

450+ people, 8 dedicated rib chefs (4 with additional “fluff”), a boatload of meat (this is funny to those that now know we don’t eat it anymore), a phenomenal food crew, bartender (and estimator) extraodinaire, 2 amazing bands, a Nemo jumpy, F U N kids games, desserts GALORE, 66 raffle baskets decorated and organized to perfection, kids knife hand striking and learning self-defense, a panel of rib judges, a street full of the world’s most supportive neighbors, a birthday, parents of friends, siblings of friends, future in-laws, a popcorn machine, 3 of the worlds greatest grillers, untiring volunteers, nieces, nephews, cousins, babies, dogs, love, laughter, Grandma, Omma, Obba, Grandpa, Gigi, aunts, uncles, grandparents, godparents, aquaintances turned friends, a friend and sister-in-law that I would love to go into an event planning business with, wine, lemonade, water, a tower ladder firetruck, countless friends and family, one amazing God all for one unbelievably inspiring little boy.

That paragraph doesn’t do the day justice but the feeling of complete and abounding love isn’t that easy to express in writing.  We are blessed, not only with our amazing children but by a God who is unconditionally loving and taking care of us and by a community of people that have made our cause their’s too. 

We are forever grateful for the help in raising over $8,500 from the Chillin’ & Grillin’ event and almost $30,000 this year.  The awareness is still out there and we are continuing to hit people and receive donations, which is AWESOME.  When I think back to last Saturday, an oldie keep popping into my head: 

It's the Eye of the Tiger

It's the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
Stalks his prey in the night
And he's watching us all
With the Eye of the Tiger

This song holds such great memories of a great win, a triumph over the odds, a long shot.  That is exactly how I feel about CF.  It will end ok, we just have to fight, fight, fight to get there.  Dean loves his life, he loved his “party” and he doesn’t even know what CF is, let’s keep fighting so we can keep it that way.

Check out the awesome slideshow a friend made, capturing the events of the 2013 Chillin' & Grillin':  http://www.youtube.com/watch?v=wQ73FvIV9-o&feature=player_detailpage

With much love and unending gratefulness,

Jim & Erin

STILL WANT TO HELP THIS YEAR?

1.       If you didn’t get a chance to get in on our raffles, we do have one left for the year:  Our Each day in July 2013, we will post the winning numbers from the Illinois Lottery Pick 3 EVENING drawing. If your raffle ticket number is the winning number for that day, you win $50. Tickets are $5 each or 5 for $20.  Email if you’d like to get in on this!

2.       Volunteer at the Chicago Speedway on select dates in June or July and raise money for the CFF.

3.       Sign up for a 25 or 65 mile bike with us on September 7^th in Geneva, Illinois as we Cycle for Life.

4.       Sign up to climb on November 10^th in Chicago, Illinois as Candy leads a team for us up flights of stairs at 300 N. LaSalle as she Climbs for Life.

5.       Try out your Tae Kwon Do skills at Frankfort Black Belt Academy who will donate back to us for every summer program enrollment.

6.       Raise money for us as you take on your next challenge (marathon, bike, swim, run, etc). 

7.       Be an organ donor:  In the past few weeks, you may have read about the plight of a few families trying to save theirs childrens lives.  They are young ones, 10 and 11 in desperate need for a new set of lungs as a result of damage caused by Cystic Fibrosis.  Legalities currently stand in the way and the families are fighting hard to do what they can.  Whether or not they change the laws to allow these youngsters to get adult lungs based on the severity of their disease (as opposed to their age) remains to be seen, HOWEVER, in this case, there is a bit of a simpler solution…register to be an organ donor.  The more people that register, the smaller the issue will be in the future. 

Pig Daddy's taste submission



Pig Daddy - Tom won Best Ribs!

A view from Frankfort's Tower Ladder Truck



Dem Bones Dem Bones - People's Choice 2nd year in a row!

Yummy Dean Cupcakes



Grampa's Sweet Ribs

A sample of the raffle baskets

Thank you Jason Inc, Assembled Products, Ozinga, Poochamungas, Cannonball, Cross Technology, Peace Community Preschool, Tomlinson Law Office, Frankfort Black Belt Academy, Avid Printers, Hawkinson Nissan, Hawkinson Kia, Portable John, Inc., Treasured Smiles for your support.

Final email for Chillin' & Grillin' for a Cure 2013!

The excitement here is rising as we are only one week away from the second Chillin' & Grillin' for a Cure!

This awesome summer kick-off takes place on on Saturday June 8^th from 3-9pm on Yellow Finch Lane in the Cardinal Lake subdivision in Frankfort (60423). You can purchase tickets on June 8^th or you can avoid the lines and buy tickets via credit card online today: www.cff.org/great_strides/candg.

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. We have two prized Chillin' & Grillin' trophies up for grabs. 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 60 spectacular baskets and items ready to raffle. We have mentioned a lot of them on Facebook already, such as 4 park hopper passes to Disney, Cubs tickets, Sox Tickets, a handmade quilt, wine, spirits, an overnight hotel stay, rounds of golf, zoo membership, passes to Chicago museums, 8 hours of labor from a construction company, Toby Keith, Miranda Lambert, Dierks Bentley tickets, a stay at Grand Bear waterpark, homemade cards, H20+ basket, lottery scratch offs, Kids summer fun baskets and so so many more! 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!

Besides the basket raffles, we'll continue with raffles throughout the evenings (wine toss, 50/50 cinch bag raffle, CF Madness Tickets sales, guessing jar, etc.) and we'll start the bean bag tourney as Cannonball kicks off the evening with some awesome tunes from the 90s! The beer tent for those of age will be open as long as our supply lasts. The general timeline is below and we're closing off the street so please plan on parking on Nebraska, Morning Dove or Blue Bird.

Don't forget to bring your kiddos! 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 (donated by Hawkinson Nissan Hawkinson Kia), music by Poochamungas (a kids band) and caricatures, face painting, balloon artist by Art4Clowns, Taekwondo sessions by Frankfort Black Belt Academy and many other kids games to keep the little ones smiling.

You entry ticket includes entertainment by Poochamungas and Cannonball, food (burgers, dogs, sides), drinks (lemonade, water, beer), kids games and dessert.You can also purchase raffle tickets and rib tickets the day of.

Thank you for all of the AMAZING help and support we've had so far and we are 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/

MUSIC
3-4:30 - Poochamungas
7-9:00 - Cannonball
FOOD

3-9:00 - Alcohol and Non-Alcoholic beverages included with entry
4-7:00 - Food available
4-6:00 - Rib Tasting from 8 Chefs (limited tickets available for purchase the day of the event)
ACTIVITIES
3-9:00 - Bounce House (generously donated by Hawkinson Kia, Hawkinson Nissan)
3:30 - 65 Roses kids craft
4-6:00 - Caricatures, Balloon Artist, Face Painting by Art4Clowns
4:30 / 6 - Tae Kwon Do sessions by ATA Frankfort (for kids and adults)
6:30 - Adult Bag Tourney

7:00 – Working hard to get the Hawks game on…
organized kids games throughout the event
RAFFLES
3-8:00 - Over 50 Baskets to raffle off, Adult Wine Toss, CF Madness Ticket Sales, Cinch Bag Raffle

Happy 5th Birthday Evie Dorothy!

A little break from the CF updates to share that Evie Dorothy Burns turned 5 yesterday!  Time flies...she is an awesome little girl.   Jim took the day off of work to take her to breakfast but she said, I don't want to go!  He said ok.  After a great day helping in her classroom at school and a short playdate, Jim asked her to go to lunch, she said, I don't want to go!  He said, well what do you want to do?  This was her answer:

Evie doing pull ups

Our little overachiever watches and mimics dad in all his athletic endeavors.  Love it!

We cooked her favorite dinner (Auntie Mayra's marinated Flank Steak and corn on the cob) which doesn't jive with the plant-based nutrition but we obliged for our little Sweet Cheese.  When asked earlier, Evie said she didn't want cake, cupcakes or a cookie, just ice cream from the creamery but we had to take our bikes there to get it.  She wouldn't accept riding in the car.  We had a great ride, the storms held off and the kids got a treat we don't usually indulge in:


Evie - 5

Cali - 9

Owen - 7

Dean - 3

 Evie, we pray you all treasure your free spirit and forever keep your sense of independence and adventure.  We love you with all our hearts!

2013 Great Strides - another AMAZING day!

Last Saturday was an awesome day!  We gathered early in the morning with the sun shining, the fear of rain erased by the beautiful blue sky and an abundance of amazing family and friends for our third Orland Park Great Strides Walk.  After setting up the tents, tables, chairs,  t-shirts, and hanging the banner, we were blessed with an abundance of food from dear friends to satisfy every craving all of our 150 team members had.  We were able to chat, walk and share while Dean (and Evie, Owen and Cali) ran around playing, smiling and turning his head at the camera.  Associates from both the Frankfort and Tinley Park Kohl's participated and shared their morning volunteering with us, only one having a connection to Dean.  I want to list out every name of all the people that helped us last Saturday but I'd be listing everyone. We wanted to talk to everyone on Saturday but there were those that we only got to hug and say hi and goodbye too.  We appreciate the time and energy it took to join us.  We are so blessed and amazed by the support we receive, both financially and spiritually and absolutely know we could not do this without any of you.  The majority of the $23k so far has come from your generous donations and the people that have signed up to help us raise money by sending our story to their family and friends.  We are excited to have another two (maybe three) more walks this year:  Aunt Karen will be walking in Reno in a few weeks and Aunt Dor in October in Palm Springs.  We are forever grateful for their time and excitement for our cause.  Here is a team picture from last Saturday and a wonderful picture of just how tired Dean was by the time the walk was ending.



Eat. Pray. Dean Orland Park Great Strides 2013

Sleepy Dean on dad's head

Besides the two walks, we are doing everything possible to generate money to ensure that by the time Dean is eligible, he'll be able to have medicine to treat the underlying cause of his Cystic Fibrosis.  If we didn't already mention, nearly 90 cents of every dollar goes directly to fund vital research and development.  Money is what pushes the needle to get us closer to the cure.  Prayers are what help keep us faithful that our cure is within reach.  Yesterday evening, Cali asked me how long a person with CF lives. I almost cried at that question, hoping that I would never have to verbalize to one of the kids.  Armed with the knowledge that the truth can never fail, I told her. 37 is the median life expectancy. I will turn 37 this year and as Kimmy said, I couldn't imagine my life being near the end.  I explained to Cali that that is exactly why we fight so hard to raise money, why we get up and do all 3 meds and a vest treatment first thing before breakfast EVERY SINGLE MORNING and a vest again before bed, EVERY NIGHT.  That is why we take him to clinic appointments every 3 months, why we make sure he gets a ton of exercise, why we keep up with his vitamins and enzymes, why we changed our diets so that they ALL understand how important nutrition is to their well-being. That is why we walk in Great Strides, why we spend a crazy amount of time ensuring that the Chillin' & Grillin' event is fun so people want to support us and keep coming back.  That is why we run, bike, climb, swim - to not only raise money with Team CF but to teach all the kids that besides nutrition, exercise is vital to keeping your body healthy. Finally, that is why we pray and have faith that we can accept and know that God put us here for a purpose and we're all in this together.  This family works with all of us in it and that's exactly how we intend to keep it.  I hope that calmed her fears a bit, but I know it made her realize how important of a role she plays in helping raise awareness and in loving and fighting for her brother.

We are preparing for the Saturday June 8th Chillin' & Grillin' for a Cure on Yellow Finch Lane in Frankfort, Il. from 3-9pm. Check out the schedule of events and purchase tickets at www.eatpraydean.com.  We welcome you to join us and support this very worthy cause for either the satisfaction of knowing you're helping Dean, the 30,000 others in the U.S. or just to have a FUN family day. 

Connect with us on Facebook at www.facebook.com/eatpraydean where we'll soon post the raffle items that we have and on Twitter @EatPrayDean and Instagram CURE_CF_EATPRAYDEAN

Thank you for all that you do to help us add tomorrows.

Info on Dean's Great Strides Walk and Chillin' & Grillin' for a Cure

Our Great Strides walk is on Saturday May 18th at Centennial Park in Orland Park, Il.  Centennial Park is large and the best place to park is in the Metra station (10401 153rd Street) and walk across to the fields.  Registration and light snacks at 9:30 with a kick-off speech at 11, followed by the 2.5mile stroll around the park and a boxed lunch around noon.  Bring your bag chairs, strollers, wagons, scooters, camera and an umbrella or sun screen.  Thank you to the amazing group of people that have already registered and helped us fundraise by reaching their family and friends - we're at 50% of our 2013 goal of $30k!  Pre-register/donate for the walk here: 

http://www.cff.org/Great_Strides/JimandErinBurns.

 

We're bringing back the Chillin' & Grillin' for a Cure this year on Saturday June 8th from 3-9pm on Yellow Finch Lane in Frankfort, Illinois.  You can see the lineup of events and prepurchase tickets at http://www.cff.org/great_strides/CandG.  Tickets are discounted through May 31 and include your food, drinks, music by Poochamungas and Cannonball, bounce house (supplied by Hawkinson Kia, Hawkinson Nissan), adult bag tournament and kids crafts, games and activities (Art4Clowns will be here again with the Caricatures, face painting and balloon artist and Frankfort Black Belt Academy will host mini Tae Kwon Do sessions).  We will have a separate rib competition and a ton of raffles (including 4 one-day park hopper passes to Disney, a basket by Beam, Inc., 31, movie passes, Museum of Science & Industry, Shedd Aquarium tickets, rounds of golf, minor league hockey and baseball tickets, housewares, kids summer fun basket, wine and so much more).  Like us on Facebook to get more frequent updates:  www.facebook.com/eatpraydean.

 

Our little man turned 3 on March 30th and is full of excitement and "gweat" ideas. Healthwise, he's doing well digestively but recently had to increase his daily respiratory therapy routine after his annual X-ray showed additional inflammation and mucus build-up in the lungs. In true Dean form, he's taking the extra daily meds like a trooper. 3 inhaled and nebulized meds and a vest session in the morning before his day starts and a vest session in the evening before we wrap up our day is his norm. Phase 3 Clinical trials start in a few weeks for the combo of drugs that we pray will be his cure. It's so close, it's hard to contain the excitement and feeling of hope. Thank you for being a part of this, for your support and your prayers for his health and his cure. 

 

With love and thanks,

Jim & Erin
www.eatpraydean.com 

Another year we're Shufflin'

I didn't plan on a post today but really had a moment during the 2013 Shamrock Shuffle so thought I'd share.

My training wasn't what it should have been, I do admit that one.  Jim will testify to that, but I signed up because we like to do this race together when we can and a good friend motivated me to sign up days before it closed (thanks Kelly...this post title is for you :) ).

Anyway, I wasn't in the best of moods preparing to run this 8K myself.  Jim, in his fitness excellence, managed to run his way to a Corral B start (I was 20 minutes behind) so I was giving him a hard time for running a race "with him" when we were only with each other until gear check.

The weather was beautiful for a run and after waiting 45 minutes for the start, I actually generated enough excitement to pump myself up for my solo journey.  Decked out in my Team CF shirt, I was pumped and ready to start.  Crossing the start line was nice but my limited training showed within the first half-mile and the cold wind and air made it really difficult to catch my breath.  I was struggling and not happy.  As I crossed past mile marker 1, I immediately thought of the irony of me struggling to catch my breath as I run in a race where I helped raise money for all those suffering to breathe.  I almost lost it.  I made all those crazy faces one makes to keep the tears from falling and I knew our adorable nieces were waiting at mile 2 so had that to keep me strong and focused.  I saw Nikki, Charlie and Kimmy and immediately felt better, knowing how many people are out there supporting you in so many different ways helped. I got a few quick hi-fives before turning to continue and shortly was able to regulate my breathing.

Nikki & Charlie

 I was relieved to be running steady, breathing steady and starting to enjoy the race.  I was about halfway through but mentally found it hard to get over the fact that some people just don't get to get that big gulp of fresh air or feel the satisfaction of a deep breath.  Dean is fortunate enough now to have full lung function but I was scared for the inevitable, sad for the CFers that deal with it already and praying for Holly who recently lost her battle.  Don't get me wrong, it was a beautiful day out there and the crowds cheering and people are great but when you pray to God to help get you through something, you have to be prepared that it's not going to be easy.  Just at that moment, another fellow Team CF runner runs past me, says hi and tells me to keep up the good work.  Right place, right moment, I really needed that.  So I kept on running, vowing that I'm not going to stop (the race, nor the fight for the cure).  The crowds during the last mile were motivating, the music was pumping, the finish line ahead, end in site and later finding out that not only did I run my personal best but Jim smashed his personal record. I'm predicting an elite runner title in his future.  Good job babe!

After the race, we met up with Kim and Brian after his awesome run, some other great fellow runners, met some new friends and old friends from years ago and the most adorable 2 year old we've only seen in pictures!

Oh, and the coolest thing of all...on the way to pick up the packet a few days back, Jim's explaining to the kids where the race will start, end, where the lake is and Dean says, "Daddy, when I grow big, I'm going to run a race too."  I'm determined to run a race with Dean one day and dedicated to make sure he has the breath to do it with.  Please save the date for our Chillin' & Grillin' for a cure on Saturday June 8th, 2013 at our place and if you're unable to make it, please consider a tax deductible donation:
http://www.cff.org/Great_Strides/JimandErinBurns

With love, 
Ere

BY, Jim, Erin

Bananas and Beer Post Race

My running buddies next year:  Scott & Sue