a different kind of perfect

Dean's Great Strides Walk on Saturday May 16th

2015-05-11T20:29:00.000-05:00

Hello all! Dean's Great Strides walk is this Saturday, May 16th and we are excited to see you out there at Centennial Park in Orland Park at 9:30 am. If you have your Eat. Pray. Dean t-shirt from previous years, please wear it!

Dean just asked tonight while we were putting him to bed, when is my walk? It's neat to see him getting excited, although he cannot comprehend what exactly it all means but Jim and I are so grateful for your support and love.

If you can make the walk this year, PLEASE register by clicking on this link and choosing JOIN OUR TEAM. If you cannot make it but would still like to donate, click here.

With love,

Jim & Erin

Great Strides 2015 Walk

2015-05-03T23:09:00.003-05:00

Here we go, starting with a Dean update: The kid is awesome, he just turned 5, loves, loves, loves to build legos and bounce on the trampoline and run around chasing Cali, Owen, Evie. He loves to count, read his sight words and can bust a move! On the medical side, he's growing, doing his treatments multiple times a day and recently spent hours at the hospital with labs, X-rays, clinic appt and his first time doing a Pulmonary Function Test. He hasn't mastered the technique but scored high, which indicates his lungs are staying healthy.

May is Cystic Fibrosis Awareness Month and we're walking again this year as we celebrate another great year and currently anxiously awaiting some news from the FDA about a drug that is targeted toward those with Dean's mutations (although for ages 12+, we are excited for what the future holds for our superhero).

We will be at the Orland Park walk on May 16th at 9:30 am again at Centennial Park and hope you can join us! If you will be there, please register here by clicking on JOIN OUR TEAM: register here

Hickory Creek, one of the amazing schools in our district hosts a CFF walk each year. Since our last update, we've been partnering with them to make their walk this year a community event. Please look for info from the school coming soon for their May 22nd event and how to donate to the CFF through the school.

If you can't join the walk with us this year, but want to donate: http://fightcf.cff.org/goto/eatpraydean

Thank you time! Jim's awesome cousins and family from out west are walking for Dean next weekend and a wonderful friend from college will be walking in North Carolina the same day of our walk here. Additionally, a great big thank you to the Delta Phi Epsilon ladies at UIC who are raising money for Eat. Pray. Dean this year; above and beyond and we're thankful for all of you!

Finally, if you haven't seen the video that Dean was a part of, please take a few minutes to see Dean in action: https://www.youtube.com/watch?v=DySt5tLi4G8

With gratitude,
Jim & Erin and Cali, Owen, Evie & Dean
xo

Other upcoming events
Night at the Windy City Thunderbolts - July 23rd (for more info email: vizzabe@comcast.net)

CF Cycle for Life - Aug 22 - 30 or 60 miles at Kuijper’s Farm in Maple Park, Il.

CF Climb for Life - Nov 8 - 58 flights, 1200 steps at 300 N. LaSalle in Chicago (Delta Phi Epsilon - we're looking forward to seeing you there)!

Dean, 5

Eat. Pray. Dean 2015

2015-02-04T19:08:00.000-06:00

Dean is our superhero, we don’t even try to hide it. He is now almost 5 years old. He thinks that every penny we have should be spent on legos, he can read about 20 words, he loves to sing and dance, play Playstation, play soccer, and he cannot wait to join a basketball and football team. Dean has joined his older brother and sisters in the valuable and true art of arguing and defending his position (on everything)! He has a heart of gold and truly feels and cares for those he meets.

Dean continues to take enzymes with every snack and meal (about 20 a day)! He has racked up over 570 hours on his vest machine and this does not include the multiple nebulized treatments each morning and evening. We travel with his treatments wherever we go, making his meds a priority in life and continue to fundraise so that one day he can breathe easily and carefree. With your help, over the past four years, team Eat. Pray. Dean has raised over $140,000 through various walks, runs, cycles and Climbs.

We can write forever but we will let you watch the Annual Cystic Fibrosis Foundation video that Dean was blessed to be in:

2015 Cystic Fibrosis Foundation Video

Please pray for a cure, for the scientists working so diligently on the developing science and research, for Dean and other CFers and their daily fight and for all of the events we try to share and participate in to raise awareness. The three ways you can help:

1. Join one of the events we are already leading and participating in:

Orland Park Great Strides May 16 - register as a walker, make a donation, send out to your friends.

CF Cycle for Life - Aug 22 - 30 or 60 miles at Kuijper’s Farm in Maple Park, Il.

CF Climb for Life - Nov 8 - 58 flights, 1200 steps at 300 N. LaSalle in Chicago (Cali is already recruiting friends for this)!

2. Host your own event (thank you Amy for already registering your team in North Carolina). There are Great Strides walks, CF Cycles, CF Climbs already set up nationwide. We will set up a team for you near your home and you can ask your family and friends to join you for an awesome morning supporting a cause that really needs you now!

3. Donate to fund the cure: http://fightcf.cff.org/goto/eatpraydean

Thank you for helping us fight CF - one day soon, this will stand for CURE FOUND! Please share this letter with your address book to help us raise awareness!

With love,

Jim & Erin

teamburnsy@gmail.com

web: www.eatpraydean.com

facebook: www.facebook.com/eatpraydean

twitter: @eatpraydean

Dean (4) Jan 2015

Dean's Quarterly CF Clinic (Jan 2015)

2015-01-14T16:53:00.002-06:00

Dean had his quarterly CF clinic appointment yesterday. Our personal goal for Dean at this appointment was to reach 41 pounds...he weighed in at an even 42! Our little over-achiever. 7 specialists, 1 culture, muscle measurements, countless questions, 2 add'l scripts and off we go with our man of steel.

💥BOOM CF BOOM💥

2014 Eat. Pray. Dean $ to date and some NEWS!

2014-11-05T20:33:00.002-06:00

2014 started off pretty amazing on the fundraising front and week after week, month after month we continued to be blessed with a great number of donations and even more exciting, person after person offering to help, to walk, to run, to climb, to golf, to cycle, to fill the boot, to collect dimes, to sell lemonade, dump ice water and so many others who so creatively raised money for Dean. We are so grateful, so thankful, so amazed at the outpouring of love for Dean that we wanted to let everyone one just how awesome they all are to our family.

Last weekend, the last of our Great Strides Walks took place in Palm Springs, CA with three of Dean's great-aunts and some great-uncles walking the last 5K of the year for Team Eat. Pray. Dean rounding out the Great Strides total for the year to $39,405! This is by far our most successful year yet and we couldn't have done it without our awesome family and friends in California, Conneticut, Michigan, Oregon, North Carolina, Iowa and of course here in Illinois (inclding the South Side Plumbing Contractor Social Club and Pizzolato's Pirates). Then we have our Endurance folks. Wow!!! They have run, climbed and biked for Dean. Some doing their first major races too and getting fit in the process. To date, these team CF endurance participants have raise $13,284!

We're thankful and grateful for our daughter Cali that in a series of three events (the last, the CF Climb this Sunday the 9th) raised over $3,000 in honor of Dean. She even had the opportunity at the CFFs 5K Superhero race to speak to the runners about why she ran. We have seen all three of the kids eager and anxious to help raise money as well as just sit and help Dean with his treatmens or bounce on the trampoline with him. We continue to be reminded how precious each and every day is and how blessed we are to watch our kids grow.

$52,689! AHHH, so A.MA.ZING!

Anyone with a burning desire to continue donating this year, there are four more events that Team Eat. Pray. Dean will participate in this year (click on the links for the pages):

Uncle Stevie leading a team at the Mustache Dash on Nov. 8th
Candy & Greg Johnson leading a team at the CF Climb for Life on Nov. 9th
Sunni Caruso & Tarah Allen running the Edwards Marathon on Nov. 9th
Turkey Day Race for Team Deluca (their first race) on Nov. 27th!!

Ending with two more bits of info....
1. Dean's health has been FANTASTIC this year...hands down amazing.
2. Today, an application was submitted to the FDA for approval for a drug (two meds in one) for people 12 and older with 2 copies of the double delta F508 (read the story here)! Translated? We're so so close to something Dean that can CHANGE HIS LIFE. Granted he's not 12 yet, but the trials for 6+ are taking place now so it 's in the pipeline. The bottom line...YOU, we thank YOU for being a part of all of this. This HOPE keeps us going, you keep us smiling and we promise you that we've thanked God for your love and help.

With unending gratitude,
Jim & Erin
xo

p.s.-if you're on facebook, please like us to get more pictures and updates: www.facebook.com/eatpraydean

Dean, age 4, fighting CF with everything he has

Help CF Research by submitting a recipe!

2014-08-02T09:02:00.002-05:00

I think Jim will be the first to admit I've become a little obsessed with food over the past few years. It took a switch over to a plant-based lifestyle to train my palate to enjoy whole foods that were not chemical laden and processed but it is what I learned along the way that kept my interest and keeps me experimenting in the kitchen.

I love to find the perfect combination of foods that will please all 6 of us. We do a lot of stir-fry's and veggies but time permitting, I love to treat my chopping board, blender and skillet as a blank canvas and just go for it. I have lots of fails but occasionally "make it again, make it again" is chanted.

Call me cheesy but I get excited to create something with healthier fats that is nutrient dense and loaded with protein. Bonus if the kids enjoy it!

So usually we're asking you to support us in some type of way, joining an event, donating to a cause, etc. There is a different way to help over the next 6 weeks. You can read the press release for more details but for every recipe submitted to an online cookbook, money will be donated to Cystic Fibrosis Research Inc. which will use the money to provide resources on the importance of nutrition in people with CF. Super easy, you don't have to have a CFer in your home to share your recipe. Just think of something yummy that isn't low-calorie :)

You can submit your recipes to an online cookbook through September 15th using this link www.Chef4CF.com/recipes/. If 50 recipes are submitted by August 8, AbbVie will donate $5,000. If you don't feel like you have yet to create a recipe that you want to share, get cooking! No really, you can still help, just go the Chef4CF.com site and share a recipe from their site onto your social media; it'll generate some money for the program too.

Besides the fact there is money to give to CFRI, I'm also hoping for two things...one that people with CF may benefit from trying a recipe that they may not have tried before, something that is maybe rich in protein, healthy fats, and the fat-soluble vitamins (ADEK) and two that I can add a few more options to our meals.

Read the Press Release here but don't delay, enter something this weekend! Thanks!

xo

Dean @ age 4

Please Do Not Skip This Eat. Pray. Dean news!

2014-06-24T11:06:00.000-05:00

Two posts in one week? A very good reason for this.....

THIS this THIS IS WHAT YOU ARE DONATING FOR!!! Today, Phase 3 Combination Studies of Ivacaftor (Kalydeco) and Lumacaftor (VX-809) Show Positive Results in Most Common CF Mutation. Translated? Participants in this trial showed significant and consistent improvement in lung function and in other important health measures, including weight gain, and a reduction in the rate of pulmonary exacerbations. Next step? seeking FDA approval. This is a HUGE step in the treatment of CFers with two copies of most common mutations of CF, DF508. The next part that makes this post so amazingly awesome for our family? Dean has two copies of the DF508 gene so THIS, our friends, is the FIRST combo of drugs that we pray will be available for our little man. It is not a cure, but a significant milestone to treating HIS CF. The CFF WILL continue to invest in funding companies to develop drugs for other mutations as well as finding other drug combo's for DDF508 that will further improve the lives of those with CF. We can't say CF stands for Cure Found yet, but this IS a step closer. Please continue to support this quest, please, we are so close. Continue to pray for Dean's health and as Dean's great-grandpa does every day, pray for those scientists, pray that they hit the jackpot for ALL of those with CF.

thank you [tears]. xo

Please share with your family and friends.

To read the press release: http://www.cff.org/aboutCFFoundation/NewsEvents/6-24-Vertex-Phase-3-Results-Lumacaftor-Ivacaftor.cfm

Facebook: www.facebook.com/eatpraydean

Website: www.eatpraydean.com

Eat. Pray. Dean Summer update

2014-06-21T08:53:00.002-05:00

The first 6 months of fundraising in 2014 has blown our minds.

We've been blessed with a national Great Strides total of $27,838 to date (from Eat.Pray.Dean teams in Illinois, Michigan, Iowa, Connecticut, North Carolina, Washington/Oregon and walks still remaining in Nevada and California this fall)!! We are forever thankful for the time, committment and energy the team leaders put into leading walks for us as well as all the people that have already donated to our cause!

Another way we've been fundraising has been through Team CF endurance events organized by the CFF. We have teams set up for a 30 mile bike, 65 mile bike, stair climb, 5K, 8K, 1/2 marathon and full marathons. To date, the team has raised $6,396 with many events left on the calendar, we would Love for you to join us and thankful for those that have already, not only for the $ raised, but the awareness you're spreading to your family and friends! We're so proud of Cali this year, not only has she run a 5K and an 8K this year and will finish her tri-fecta of races this November with a stairclimb benefitting the CFF, but she's inspiring others to join her!

Dean: He's 41" and 39.4 pounds of awesomeness. Over the past couple of months, he's run his first race (yep, at 4), developed a bit of a sarcastic streak, become addicted to a lego batman ps3 game that he plays while doing his treatments, started advocating hard for a family trampoline and has developed this persistent cough which is the reminder that CF can strike our simple little existence at any moment.

We're thankful for your support; we know we couldn't do this on our own. With our friends, family and faith, we're going to make CF just a memory! You can continue to help us by donating if you haven't had the chance, saying a prayer for us, joining one of our future events and simply by sharing our info to help raise awareness. Regardless of what you do, know you are helping us help Dean.

XO,

Jim & Erin

If you would still like to donate, our links are below. Please continue to follow us on facebook and check out our month of CF awareness tidbits at: http://www.eatpraydean.com/cf-awareness.html

Donate to us: http://bit.ly/1j6pTqU

Donate to Cali: http://fightcf.cff.org/goto/califordean

Will you join us?

July 10: Orland Park Potbelly, 25% of purchases from 5-8pm will be donated directly to the CFF

July 11: SSPCSC Golf Outing at Silver Lakes
August 16: Team CF at the CF Cycle for Life
October 12: Run the Chicago Marathon for Dean
November 9: CF Climb for Life
Nov 9: Run the Edwards 1/2 &Full Marathon, Naperville for Dean

Dean, age 4, June 2014

Dean's 2014 Great Strides Walk

2014-05-10T14:55:00.001-05:00

On Saturday May 17th, we will be participating in our 4th Great Strides Walk in Illinois. Since 2011, Team Eat. Pray. Dean has raised over $100,000 for the Cystic Fibrosis Foundation through this fundraising event/walk, Team CF runs, cycles, climbs and other raffles and events. We know we could NEVER have done this without all of your help and we are forever grateful. Everyone helps in so many different ways that it is truly hard for us to imagine that Dean's cure will not come. We're faithful, hopeful and determined that it will so we're never gonna stop until this disease is completely cured, for every one of the 70,000 kids, moms, dads, brothers, sisters, cousins and friends with CF in the world.

For our local family and friends, please join us for our Great Strides walk on Saturday May 17th at Centennial Park in Orland Park Illinois. 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 is at 9:30, team picture at 10:15 followed by the 3 mile stroll at 11:00 around the park and a light 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 57% of our 2014 goal of $30k! Please pre-register/donate for the walk here: http://fightcf.cff.org/goto/JimandErinBurns. We're looking forward to seeing our family, friends and all the new joiners from the elementary school this year!

A ginormous thank you to Jill and Family in Dubuque who led a walk on May 3rd and Uncle Tom, Aunt Jeanne, Kalena Rod, Brennan, Ellie, Pete, Tomo and kiddos for walking out West this morning for us. We appreciate all of your love and hope!

Please take a look at the CF Awareness posts we've been posting on facebook this month and for those without facebook, you can read them on our website.

Love,
Jim & Erin

Dean in his friend Grace's yard, he loves being outside!

A CF CLINIC APPOINTMENT & FUNDRAISING UPDATE

2014-04-15T21:02:00.002-05:00

Sending out our 2014 fundraising kickoff/email blast last month invigorated us to keep pushing for that cure. Dean doesn't stop his treatments ever so why should we? We had a very busy clinic appointment today and are thankful for the team of people that collaborate to keep Dean healthy. Today, we met with Dean's CF Specialist/Pulmonologist, his CF nurse, dietician, respiratory therapist and social worker. We didn't have to meet with the psychologist or physical therapist this round (although they're awesome, it makes for a longer visit)! From the last visit, Dean has gained weight (he's a whopping 17.2kg/37.9lbs) and height is consistently in the 50-75% for height, weight and bmi. We haven't entered the age for Pulmonary Function Tests yet so a good listen to the lungs and a ton of questions about him, his eating habits and some other unmentionables, a throat culture to see if he's culturing any bacteria in his lungs and we're (almost) good to go. I'm making it sound so easy and today was all positive but the emotional stress for us can sometimes be unnerving. After we left the appt, we headed to the lab where they took 30 ml of blood to run about 5 different panels on him to test different vitamin levels and everything else under the sun! We now wait the excruciating 5 days to see if he cultured anything (which would require add'l daily medications). Say a prayer we're all clear.

We'd like to say a quick but very very sincere thank you to everyone that has donated so far to our events, to those that have held and are leading fundraisers of their own to help us, to those that are leading a Great Strides walk team near their house, for those that are training for a bike, run, climb, for those that have already ran for Dean, for those that support our events, for those that ask how Dean is doing and genuinely want to know about him and his health, for those that follow us on facebook, share our events, help us with everyday life and for those that pray for Dean, for us and for this cure. We didn’t list everyone, but we are forever ever grateful for all that you do. Follow us on facebook, where we post all the pictures and stories and thank you’s as they happen.

We know the cure is coming; we're looking forward to the day we can celebrate, hopefully soon, but we will be celebrating. In the meantime, please continue to keep us a part of your life, donate if you can and join the events we're participating in (listed below).

UPCOMING EVENTS

More are constantly added, the complete list can be found at www.eatpraydean.com but we can make any event a fundraiser for the CFF (email us for more info).

Great Strides Walk on May 17th in Centennial Park, Orland Park Illinois (Registration at 9:30 am, walk at 11). What is Great Strides? It is an easy opportunity for you to help us raise awareness and funds for CF. You sign up via the link below and a fundraising page is created for you - all you have to do is send it out to your friends and family simply saying why you're helping us. You can do this for this walk (or if you're up for a challenge, join our team at one of the events listed below). If you want to help but don't feel like an event this year, you can definitely donate to our walk page. A GREAT big thank you to everyone that has signed up already to help fundraise!

May 4: Team EPD at the Palos Half Marathon (thanks to Tim & Michelle for leading and to Dave, Maura & Caroline!)

June 1: Team CF 5k Fun Run, Barrington, IL (join Cali, she's leading this team.)

July 11: SSPCSC Golf Outing at Silver Lakes save the date, the South Side Plumbing Contractors Social Club has chosen us as their charity this year, we are thankful to have met these awesome group of men who totally have the fundraising thing down to a science. They’re committed, compassionate and fun! They are having a golf outing with proceeds to benefit Eat. Pray. Dean and CFF.

August 16: Team CF at the CF Cycle for Life (this will be F U N, we have a great team already for this 30 or 65 mile ride – thank you Kevin, Heidi, Bob, Beth, Tommy, Karen, Tom, Kathy, Pam, Becky & Scott)

October 12: Chicago Marathon (thank you Ryan for running your second race of the year for us)

November 9: CF Climb for Life (thanks Candy & Greg for leading this and Becky, Scott and Cali for joining)

Nov 9: Edwards 1/2 & Full Marathon, Naperville (thanks Sunni & Tarah for running this one for Dean!)

https://www.facebook.com/EatPrayDean

www.eatpraydean.com

Donate: http://fightcf.cff.org/site/TR/GreatStrides/45_Greater_Illinois_Chicago?team_id=14277&pg=team&fr_id=2114

April 15, 2014

After Dean's quarterly CF clinic visit

Happy Birthday Dean-o!

2014-03-30T05:54:00.001-05:00

Dear Dean,

When you were born, we had tears of joy in our eyes. You rounded out and completed our little family. That first year, despite the challenges of learning how to live with CF, you continuously made us smile and warmed our hearts. Over the past two years you have taught us immeasurable things, namely how to accept your challenges, even when you don't understand them and especially when you can't comprehend that they won't end.

We're learning again how influential we are in your life and we love how you throw our lines back at us and remind us how "ridiklis" something is.

We are reminded how great and unconditional love truly is and how fast kids grow up. We love how you run up to greet us when you wake up or when we come in the door.

Probably one of the most important lessons you continue to teach us is that it's important to plan for the future but focusing on living in the moment and enjoying each other's company is what makes life special.

We're blessed with you and we know it so even though you've asked for dad sizes clothes for your birthday, we're hoping you'll be ok with "ninja back turtle" Legos because we are loving you more and more every day and we're not ready for you to be big yet. We know you're not a baby anymore (especially because you keep telling us) but you'll forever be our baby.

Love you so much budsers.

To help continue adding tomorrow's, consider a birthday donation to our Great Strides event http://bit.ly/1iNZdyr

'We're never gonna stop"

2014-03-08T15:28:00.000-06:00

Our little boy is about to turn 4. He loves Legos, loves to dance, is the most sincere hugger you’ll ever meet and his goal in life is to just be a dad because “dads don’t have to do tweatments every day.” We can’t bring ourselves to tell him that because of CF, that may not happen so we’re stepping it up this year, we’re never gonna stop and we’re doing what we can so he CAN reach this goal. It breaks our hearts to hear him say and wonder when he’ll be a dad. He even wants us to buy him dad-sized clothes when he turns 4!

Borrowing the words from a favorite song by Hillsong United “we are ready at the line looking out to all that’s ahead. We are running, chasing after all that you are, cause all that you are is all that we want now. We are running…” for our little man. Every stride is taken in Faith, with a belief in our God and a belief that we can make a difference, that we will help fund a cure. A difference in not just the 70,000 people who have CF, but a difference for all of the families affected by CF. So we come to challenge you further to look beyond ourselves to your Love. Look beyond yourself and continue helping us make a difference. Commit to join, to continue, to push up beyond what we can do in this fight.

We’re never gonna stop. In lieu of our Chillin’ & Grillin’ this year, we’re placing emphasis on recruiting and building up a superhero force for Dean. As the song continues…we are looking out to all that is ahead. We’re never gonna stop. We would love for you to sign up and join us at the starting line for one our upcoming events:

March 30: Team EPD at the Chicago Shamrock Shuffle 8K

May 4: Team EPD at the Palos Half Marathon (Team Lead Tim Malone)
May 17: Illinois Great Strides 5K walk, Centennial Park, Orland Park
August 16: Team CF at the CF Cycle for Life
November 9: CF Climb for Life (Team Lead Candy Johnson)

Some family and friends already have committed to leading an event near them and we’re forever thankful!

Great Strides 5K, Dubuque, Iowa (Team Lead Jill Gansemer)

Great Strides 5K, Cary, North Carolina (Team Lead Amy Kelley)
Great Strides 5K, New Canaan, Connecticut (Team Lead Team Woodring)
Great Strides 5K, Nevada (Team Lead Kalena Theissen)
Great Strides 5K, Palm Springs, California (Team Lead Dorothy Yudice)

Or you can simply donate. Whatever your choice, we truly thank you for giving Dean (and us) more tomorrows. Email, text, call, fb with any questions and don’t forget to watch Dean’s 2014 video and like us on Facebook: www.facebook.com/eatpraydean.

Share our video and our plea with anyone who is willing to pray, run, bike, climb or make a tax-deductible donation. With gratitude,

Jim & Erin

Quick Links:

For where your treasure is, there your heart will be also. ~Luke 12:34

2013-09-09T14:28:00.001-05:00

When I look back to the last post date, I realize I'm not a successful blogger! By definition a blog "is a frequently updated personal journal..." but as you can guess, the title of this post clues you in to why I haven't had a second to share, however not lacking people to be thankful for so here's a recap of the past 3 months...

After the amazingly successful Chillin' & Grillin' for a Cure and Aunt Karen's Eat. Pray. Dean Great Strides walk in Reno, we set off on a mission to thoroughly enjoy our family time this summer!

Jim successfully completed his fourth Ironman, we introduced Cali and Owen to the wonderful world of rollercoasters at King's Island, Cali chose to celebrate the big 10 doing a mud race with her closest friends (where does she get that from?), we enjoyed watching fearless Evie learn more gymnastics (I spend my time holding my breath when I watch her), took a quick trip to the Dells for an end of the summer weekend with Tom Tom, Karen, Aidan and Megan - exactly what we needed to end the summer before back to school! Owen acheived a rank of red belt in Tae Kwon Do over the summer and started his first flag football season as a Steeler (he looks so tiny in his big jersey)! Cali keeps us on our toes too, with a two week late start to her waterpolo season because she had to get her appendix out (she's now a vegetarian - crazy story) but is thoroughly looking forward to having her siblings on the swim team with her this year!

On the CF front, Dean had an awesome quarterly check-up at the CF Clinic (one day I'll describe those long appointments) with a clear culture and a promise to recheck his lungs in October which I have to say allowed me to breathe a HUGE sigh of relief. Since we found additional buildup in April, Dean's morning treatments have increased and we weren't supposed to get another xray until April 2014 (a year is such a long time to know if what you're doing is working). Fortunately we're able to recheck his lungs at the next visit and we'll have a better idea if this set of treatments is working.

August brought just a non-stop flurry of activity and fun. Each year our town has a softball challenge and our subdivision won the tournament last year and was responsible to host and organize this years tournament. We were honored to find out the CFF, in honor of Dean, was the beneficiary chosen for the challenge. August 4th was an absolutely gorgeous day, filled with sunshine, families and 11 teams from Frankfort, all dedicated to giving their best, their all, their time, energy and money to help us raise the $ we need for a cure. In preparation for the day, so very many people (many who had already helped us for the Chillin' & Grillin' and the Great Strides Walk) spent an enormous amount of time making sure the day was awesome. Food, drinks, sno cones, raffle prizes and face painting were gathered, donated, served and precious little faces, arms and hands were decorated. A generous man from Frankfort rolled out the Weiner Wagon and donated hot dogs and his time and then his enormous tip jar to make our day even more successful. Countless businesses and individuals helped make this an event we'll never forget. A precious little girl rocked out the National Anthem without hesitation and Dean got to throw out the first pitch. The fire department made Dean's day by showing up with the truck and ambulance, parking right next to a Natural Gas cement mixer. Fun times. A great big thank you to Amy, Greg, Paula, Jeff, Judy, Kari and every other person that helped set up, play, take down and make such a successful donation to the CFF. We're so amazingly grateful and good luck next year Misty Falls....

A few days later, Oberweis held a day long event to give back a portion of the proceeds from those that visited the store because of our event. We haven't found out the amount from that day but graciously thank all those that stopped by and ate some ice cream (surprisingly, we didn't have to beg at all to get a good showing here)!

We were fortunate enough to meet the wonderful Kane family, whose goal each year is to host a charity luau and raise funds for those in need. Amongst stories of those they knew, they invited us to join their event as they were raising money for the CFF. We had a blast, reconnected with an old friend, met some great people, saw a Nature's Creature's show and again were blessed to be at an event, so meticulously planned, that helped us realize again, that each day is a gift and what you do with it can truly change the world.

Last weekend, Jim & I set out to do our first CF Cycle for Life. 7 amazing friends joined us, collectively raising $4,500 since January for an event that I don't think any of us will soon forget. The ride, 65 miles for Tommy & Jim and 30 for Karen, Tom, Becky, Scott, Kathy, Pam and I was set in the gorgeous (mini) hills of Geneva. A little rain, thunder, lightening, some pickle juice, gatorade, snacks and some generous, generous donors continues to bring us one step closer to our cure. We're abundantly blessed for the time, energy, humor and love that this team put into riding and raising this year and we're excited to already have 7 people signed up for next year!

Tom, Karen, Scott, Becky, Pam, Kathy, Erin, Tommy & Jim

You can join us next year too or consider one of two remaining events this year, a CF Climb for Life on November 10, led by another great friend, Candy or a Palm Springs Great Strides walk on Oct. 26 led by Aunt Dor.

So, looking back, our treasure is our kids. Our heart beats to them now, making sure they learn how to make best use of their talents so they can be a blessing to others. We truly loved being able to accept almost any invitation extended this summer, swimming, biking, play dates, visiting with friends and family (especially one that is now 1800 miles closer than last year), dinners, lunches, hanging out on the driveway, pretending we're just as good at the ripstick as the kids...we'll skip those pictures...

It's not always smiles and giggles here but we tend to be half full with our glasses so the good far outweighs the down times.

Blessings,
J&E
www.eatpraydean.com
www.facebook.com/eatpraydean
www.twitter.com/eatpraydean

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

2013-07-10T16:09:00.001-05:00

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

2013-06-15T07:47:00.001-05:00

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!

2013-06-01T22:32:00.002-05:00

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!

2013-05-22T20:56:00.001-05:00

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!

2013-05-20T23:45:00.000-05:00

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

2013-05-05T11:16:00.000-05:00

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'

2013-04-07T17:19:00.000-05:00

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

Happy 3rd Birthday Dean!

2013-03-30T14:55:00.001-05:00

Dear Dean,

Happy 3^rd Birthday little man. You are a crazy awesome 3 year old now. Even since you could talk, you have made us laugh because you are so sarcastic. It’s amazing how much like your dad you are. J There are so many things you have grown to love:

· garbage trucks, taking out the trash and your flourescent garbage man vest

· your favorite lunch of peanuts, salami, cheese and apples

· strawberry italian ice and slushies

· giving gifts to people

· dora, bob the builder and pablo – treatment time just flies by with these friends

· building houses and knocking them down like the big bad wolf with Obba

· the sunshine on your face, taking walks, getting the mail

· singing your Hosanna song (over and over, louder and louder)

There are so many things you know how to do:

· make us laugh; you have such a powerful, shoulder shaking laugh

· make us smile when you run to the door to give Cali a big hug when she walks in from school

· giggle like there is no tomorrow when Dad tickles you

· roll around and hold your own when Owen wrestles you

· making “smoodies” with Evie

· telling knock-knock jokes that don’t make sense but we laugh because your laugh is infectious

· make your aunts laugh by calling them "uncle"

· cooking and shopping with mom (and our quick trips to the museum)

There are so many things you shouldn’t know about/have to endure at this young of an age:

· why you have to so frequently wash your hands and use “hanitizer” to get rid of germies, they’re everywhere, right buddy?

· why having too many fruit snack and too much sugar hurts your belly

· why you need to wear a mask when you walk into your doctors appointments

· blood drawn, annual x-ray’s, quarterly throat cultures, quarterly clinic appointments

· why your BMI is measured at age 2

· why all the people in your clinic visits are covered head to toe and you can only see their eyes and hair

· breathing and respiratory clearance treatments first thing in the morning and last thing and night

We pray that you will always have the desire to help and give to others. We pray that you continue to enjoy each and every day and relish the simple things in life, like playing, making others smile by letting them know they they’re your “friendy” or that you “wuv” them. Snuggling up with your Omma, Obba, Grandma, Gigi or Grandpa and making them know that your love comes right from the heart. We pray that you will always be as strong as you have been these past 3 years and that you’ll always be an example of just how great of a blessing God sends to Earth. We promise you that we’ll fight every day for you. We’ll enjoy the time we have with you, your brother and your sisters but we will not stop fighting until a cure for CF is found. We promise. We love you little buddy, you are our deano sheano cappuchino.

Love, Dad & Mom

To help us smash CF for Dean: http://www.cff.org/Great_Strides/JimandErinBurns

2013 Eat.Pray.Dean Fundraising - a year of HOPE

2013-03-11T00:15:00.001-05:00

Hello everyone!

Happy (almost) 3rd birthday to our little Dean-o! Dean still loves garbage trucks and building towers, wrestling his brother, watching for the UPS and FedEx guys, playing tag with his sisters, sword fighting, pretending everything is a walkie talkie, baking with Mom and dancing to loud music with Dad. He's awesome. Dean also asks before he eats if a food has fat in it so he can take his digestive enzymes. Dean is a champion and takes daily doses of ranitidine, extra A, D, E & K vitamins and antibiotics when needed. Dean knows how to turn on a compressor to start his nebulized treatments right after he wakes up. He also knows how to put the tubes from his respiratory therapy vest into the compressor and knows which buttons to press to get his twice daily treatments started. He's starting to potty train, he loves to make smoothies and thinks everything he comes up with is a "gweat idea!" He looks fantastic, talks non-stop and tells us how very much he wuvs us. For all these reasons, we can't sit back knowing we can make a difference for him in ways other than what we do daily.

Why we are so hopeful

We're fired up, we're ecstatic, we're on our knees in prayer. This May, phase 3 clinical trials will start for the drug that in combination with Kalydeco (on the market since Jan 2012) we hope will be Dean's cure. The belief that this could be it is too exciting to contain. The small percentage of people that can use Kalydeco are experiencing a virtual cure. The results are pretty amazing and we pray to God that this works. Another CF mommy called this a game-changer and it's true, this has the potential to change the CF world that we live in but we need to keep this going!

What we need from you

We've had two successful years raising money for the CF Foundation through the Great Strides Fundraising event (Illinois with all of you, Nevada with Kalena and Maryland with Marie) and the many fundraisers that were held on our behalf. We are very thankful and so very fortunate to have the help, love and prayers that we do for all of the events! We could not have raised money or awareness in that capacity on our own and we would like to continue raising as much as possible to make sure that the research dollars are there so that Dean's and the 70,000 others with CF worldwide are all cured. So, we have been told countless times that people really do want to help, all we need to do is ask. So we're asking.

Please consider bringing Eat. Pray. Dean to one of the many walks that are already set up across the nation (it's not hard and we and the CFF will help you find the walk and set up your page - then it's just sending out your email). If we can continue to expand, we could inform so many more people and raise a TON more money! This would make a huge difference to us, our team and ultimately Dean.

If your own walk isn't possible, we would love for you to set up a page and share our story with your family and friends and join us for Great Strides on May 18th in Orland Park. We know there are so many causes out there, but every penny counts. When people start to branch out, imagine what will happen! Imagine how much more money we'll raise together, and more important, imagine how much closer we'll get to making a better life for the people we love with CF.

Donate to our page and help us work toward our goal: http://www.cff.org/Great_Strides/JimandErinBurns

Keep in mind all the Team CF events that are out there and spread the word (Shamrock Shuffle, Chicago Marathon, Barrington 5K, CF Cycle for Life, CF Climb for Life).

Dean's video

Check out Dean's new 2013 video: http://youtu.be/1OBjbOcR-Pk

Save the Dates

Saturday May 18 at 9:30 am: Great Strides at Centennial Park
Saturday June 8 from 3-10 pm in Frankfort: Chillin' & Grillin' for a Cure (this is our BIG FAMILY event that you do not want to miss)

Other events we're participating in

April 7: Team CF at the Shamrock Shuffle

June 2: Team CF at the Barrington 5k run

June 22: San Rafael Reno, NV Great Strides
September 7: Team CF at the CF Cycle for Life (25 or 65 mile bike)
October 26: Palm Springs, CA Great Strides

Keep in Touch

www.eatpraydean.com

Click here for blog updates delivered direct to your email

New! Facebook: www.facebook.com/EatPrayDean

New! Instagram: cure_cf_eatpraydean

With love and many thanks for your support,

Jim, Erin, Cali, Owen, Evie & Dean

Yay! A brand new Apple(sauce)

2013-03-02T09:23:00.005-06:00

The past few years has been full of crazy research trying to figure out Cystic Fibrosis and stressing out over his nutrition and the fact that we need to cram him full of high-fat, high-calorie foods to optimize growth and get him stronger because he will burn more calories with his labored breathing during an illness or lung infection. Dean needs to take manufactured enzymes so his body can absorb fat, protein and fat-soluble vitamins. Then we worry about the stress this is causing to his pancreatic tissue and we know, we know, we know his cure is but a few years away so when this happens, we don’t want to run the risk of dealing with heart disease or other issues.

We also stress about our other three kids and their reliance on sugar to satisfy their cravings. We want them all to understand that God gave us what we need so let’s try to go back to the basics, retrain our palate and see if it makes us feel any different. So, all this reading, researching, talking, etc. continued to lead us back to a plant-based diet. Honestly it just didn’t seem feasible, didn’t seam doable, didn’t seem economical (I can come up with a boat load more of excuses) but we did come across one documentary that showd actually HOW to make this healthy eating work (The Engine 2 Kitchen Rescue available on Netflix or Amazon Prime). So we took the 28 day challenge, started February 1^st and decided to see how we feel. We kept cooking “normal” for the kids as we wanted to see how this would affect our bodies, how we’d feel, could we tell a difference? How did we feel? Could this be sustainable? Jim, being a vegetarian for 4.5 years was psyched I was willing to try as he knew there would be more food for him to eat, rather than the countless veggie stir fries or pasta and veggies (or butter) that I cooked. However, I personally anticpated clawing my way out of February and prepared myself for a month of pure torture.

I was unbelievably mistaken. Fascinated by the challenge and floored by the results.

In summary,

The majority of our recipes came from the Engine 2 Diet book. I found some others online (there are some great vegan sites out there).
With our new Vitamix - the best appliance on earth, well worth waiting longer for my Apple (not necessary but super helpful)! The variety of things we were able to create using this blender helps to make the process a little more fun:
Smoothies - used to get extra veggies and fiber-filled fruit into all 6 of us; used as a great way to satisfy a sweet tooth and a great way to get the kids involved while slaving away in the kitchen.
Soups - yep, 6 minutes to a warm, yummy, blended soup.
Sauces, nut creams and salsas to top our food and dress our salads.
Nut butters to spread on the kids sandwiches and to mix on homemade granola.
Homemade ice cream, applesauce, hummus, the list is endless!
A simple rice cooker is another helpful appliance (we got ours years ago at Target for $15).
We started a weekly delivery of organic produce from Timber Creek Farms (we did this because I was stuck in a rut when it came to buying veggies, always buying the same and I wanted to be “forced” to try something new)
We were lazy in relying on convenient, chemical filled foods to feed our family and chose to limit the processed foods we brought into the house.
We made what we could from scratch (sauces, vegetable broth, salsa, hummus, nut butters, etc.).
We tried new foods: beets (yum), chia, hemp and flax seeds, parsnips, chard, kale and leeks.
We spent a crazy amount of time in the kitchen; it was fun to create something so healthy that tasted so good. The tastes were A.m.a.z.i.n.g! Truly, once you let yourself taste whole foods, you will notice when you are tasting something full of chemicals.

The results are truly awesome! I lost 10% of my body weight; Jim lost 6% (remember he’s already been a vegetarian for almost 5 years). I am completely off caffeine (and did not experience the crazy withdrawal I have before when I stopped coffee). Our energy levels have never felt greater. The late afternoon crash we always experienced never occurred. Digestively, everything just feels better. I think I gained a few brain cells back and my temperament is a lot more positive (of course Jim never experienced a loss of brain cells or a bad mood so he can't comment on those). :)

Getting to a point of trying this was a process for us. We were fairly healthy to begin with, our numbers (cholesterol, bmi, weight, etc.) were all in normal range when we started. Our main driver is to keep all our kids healthy for life. Plus we totally love challenges.
Time is precious and fruits and veggies are expensive but so are medical bills associated with certain diseases that can be prevented by nutrition.
When your kids start asking for carrots and celery and making smoothies instead of asking for oreo’s, you feel good and know you’re making a difference for them.
Two aha! moments during Feb that made us know we were on track:

During church one weekend while we were doing this challenge, we read a story about Daniel and how he challenged a guard to test his servants for ten days by feeding them only vegetables and water and at the end of the days compare their appearance with that of those that eat royal food. At the end of the ten days, the servants looked healthier and better nourished than the others who ate the royal food.
During a parent meeting at the hospital, we heard a promising story of a patient in our center who has the CF mutations that the Kalydeco drug (released Jan 2012) fixes. She is nearly, virtually cured, reducing treatments and feeling better. We talked about nutrition then and how the mindset of CFers will have to change. When cured, it’ll no longer be eat, eat, eat, it’ll be eat healthy, you have a long life ahead of you. So again, for the second time we thought, ok, we’re on track.

So just wanted to share with you all. The food was delicious, our eyes were opened to what types of processed foods we were consuming and our kids, although complaining loudly at times, are starting to make better choices and understand that their life really depends on it.

Will we stick with it? In moderation, yes. We will continue to cook like this, we will continue to serve plant-based foods at home and continue to try new fruits, vegetables, grains, flours and new recipes. If you have any recipes you suggest us trying, please send them through! When faced with a date night out, being away from home for various events or when we host our annual rib cook-off on June 8th, we will, as with anything in life, practice moderation. For the kids, we will continue trying to get them to make healthier choices and pray they feel the "whole food" difference too.

Some recipes we tried and some pictures too!

Breakfast Quinoa

Black Beans and Brown Rice Extravaganza

Veggie Burgers

Raise the Roof Sweet Potato Lasagna

Sweet Potato Tacos (minus the sauce)

The dairy "cream" sauce we used in made in place of sour cream

Avocado Hummus

Grapefruit Avocado Smoothie

Vegan Baking Secrets

Parsnip and Sweet Potato Fries baked in a little grapeseed oil

To satisfy the need to snack

Veggie Stir-fry with beans and homemade sauce over rice (Jim's creation)

Veggie Panini (Engine 2)

Potato Enchiladas (Engine 2)

Beet & Cherry Smoothie

Team CF opportunities and opportunity to win Blackhawks tickets!!

2013-01-31T21:23:00.002-06:00

Hello everyone!! There is a lot going on this year! As usual, we’ll be gathering for our 3 mile Great Strides walk on Saturday May 18^thand our 2013 Chillin’ & Grillin’ for a Cure on Saturday June 8^thbut we couldn’t wait until our annual letter to share these exciting opportunities with Team CF to achieve your personal fitness goals while raising awareness and funds in pursuit of a cure for those living with Cystic Fibrosis. As a quick update, Dean is doing awesome, growing, gaining wait, keeping those lungs clear and praying for health. If you are ready to challenge yourself to running, cycling or climbing and fundraising for a cure, here are some great opportunities...

As incentive, anyone participating with Team Eat.Pray.Dean for Team CF will be eligible to win a set of Blackhawks tickets to the March 6^th game vs. Colorado Avalanche. You’ll get one raffle ticket for each $100 you raise as of 9 am on Friday March 1^st. Winner will be announced on March 1st.

· Shamrock Shuffle (Sunday April 7) - Team CF has its first ever presence as a Shamrock Shuffle charity. If you’re a veteran Shuffler or would like to kick-off your 2013 running season and want to help us raise money for the Cystic Fibrosis Foundation register before it closes and select the Cystic Fibrosis Foundation in the charity section of the registration. Benefits with Team CF include welcome Kit including: training tips and fundraising tools, exclusive Team CF racing singlet, virtual and in-person training options with Run for Change coaching and personal online fundraising website. (Registration = $45; Fundraising requirement = $250)

· Barrington 5K (Sunday June 2) – A scenic 3.1 mile course on the trail path between Citizens Park and Cuba Marsh in Barrington, Illinois. Chip timing, rest stops, and medical support will be available. Registration begins at 7:00 am and race takes off at 8:00 am. Click on Join My Team to register. (Registration = $ 25; Fundraising requirement = $100)

· CF Cycle for Life (Saturday September 7) – your choice of a fully-supported ride with route options of 25 miles and 65 miles. From breakfast to our cycle post party, you can enjoy; fully stocked rest stops every 10 - 12 miles, bike mechanics, ride marshals and plenty of support vehicles along the route. Click on Join my Team to register. (Registration = $25 ; Fundraising requirement = $150)

· Chicago Marathon (Sunday October 13) – We had 4 runners last year for Eat. Pray. Dean raise a crazy amount of money and awareness for CF. If you’ve already committed to running and haven’t aligned with a charity, please consider raising money for CF. Register with Team CF today and we'll send you a reminder to register for the marathon on February 19th via the Bank of America Chicago Marathon website! Last year Marathon registration reached capacity in just 7 days, and this year it's projected to close in just 24-48 hours! Benefits with Team CF include welcome Kit including: training tips and fundraising tools, exclusive Team CF racing singlet, kickoff to marathon training event, pre and post Marathon Team Celebration, virtual and in-person training options with Run for Change coaching and personal online fundraising website. Fax Team CF registration form back to Liz Thompson at 312-236-2797. (Registration = $190; Fundraising requirement = $1,200)

· Climb for Life (December 2013) - more details announced as available.

· Pick your Own Race - if you're already signed up for an event this year and would like to help raise the vital funds to support cystic fibrosis research, we welcome your support! Jim's doing the Muncie 70.3 in July if anyone would like to join him (hint, hint)

If you have any questions for us, let us know. You can also contact Liz Thompson at the CFF (ethompson@cff.org or 312.236.4491x108) for more details about any of these events.

Send us an email if you have registered for any of the above events to fundraise with us so we can make sure to get you entered into the Blackhawks raffle! Thank you for your commitment to help us raise funds and Add Tomorrows.

Jim & Erin

Happy 2013

2013-01-02T13:20:00.001-06:00

As always the Holidays flew by with all the excitement of a few week(s) off school and work. We kicked off the season making gingerbread houses, celebrating with a special Christmas service with Mom, Christmas Eve with the Dad & Peg and the cousins complete with a special appearance by Gorilla Santa (that is entirely it's own post) and Christmas Morning with Omman & Obba and a special visit from Uncle Stevie. 2100 miles apart can seem to be shortened with email, phone, texts and facetime but nothing can take away from a giant hug and quality face to face time. Carrying on old traditions, starting new ones, whatever the case, celebrating Christmas with those you are closest to is so very special and important to giving the kids a lasting foundation of love.

A few other exciting things helped close out our 2012...

With preschool, Evie was an angel during the annual reenactment of the Nativity. The innoncence on her little face during the play was yet another reminder to me of how precious these little ones really are and how I need to appreciate her for who she is and pray for who she will become.

Evie was an Angel at the Nativity plan - December 2012

Cali auditioned for and got the part of a reader during some of the Parkview services. After the worship team performed the trans siberian orchestra, they had an "emergency Christmas meeting" video (which was hilarious) and then Cali's part kicks in (about 7 minutes into it). Here is the link if you'd like to see: Cali's reads at Parkview's Christmas Service

Cal reading at Parkview's Christmas Service - Dec 23, 2012

One things I have always struggled with was the WHY of things. Jim is by far a more successful optimist than I but I'd still do look more at the positive than the negative but I have always had a hard time understanding the why. I once heard some wise words that even if you could explain and understand the why, you still have the WHAT. So very true. The timing is incredible as we heard this a bit after Dean was diagnosed with CF. This past weekend, the sermon was comforting as well. It centered around the kingdom of Istrel torn in two after the death of King Solomon but the take away for me was that we're not promised a life of no pain or an easy life but we can get through it if we "yoke" ourselves to Jesus and follow him. I've always known this but the imagery is greatly comforting. I feel like it was a release for me...the final click that I needed to settle the incessant why that pops into my head. Here is the sermon if you're interested in it: The Story sermon from Dec 28/29, 2012 .

So, we ring in 2013 with the kiddos at our side...and looking forward to another great year all around. One of health, truth, love, faith and a focus on truly making a difference in and outside our home. We're working hard for our cure, have some great events and ideas in the words for this fundraising year and most importantly Dean has been antiobiotic free for 12 months...a HUGE positive in the CF realm!! There are tons of opportunities to help fundraise this year (check out the list at the bottom) and let us know if you're up for any of them. Wishing you a 2013 full of comfort and joy.

January 1, 2013

Team Eat. Pray. Dean events*
May 18 - Orland Park Great Strides - join team Eat. Pray. Dean for a 3 mile walk
Date TBD - Eat. Pray. Dean Chillin & Grillin for a Cure
June 22 - San Rafeal Park Reno Great Strides - join team Eat. Pray Dean for a 3 mile walk
* If you're out of town and willing to walk for us in your own city or one near to you, let us know and we'll get it all worked out and connected to our team.

Calendar Dates for Team CF events**
April 7 - 8k Shamrock Shuffle
June 2 - Barrington 5K
September 7 - CF Cycle for Life (25 or 65miles) $13 registration through Jan 7!!
Sept 27 - 29 - Extreme Hike in the Manistee National Forest in Western Michigan (25 miles in one day)
October 13 - 26.2 mile Chicago Marathon feb 19th registration starts at noon; expected to sell out FAST!
Winter 2013 - CF Climb for Life

** If you're doing any of these events, please consider joining Team CF and you can help us raise money while achieving your own goals! Check out them Eat. Pray. Dean at the 2012 Chicago Marathon. Contact us or Liz Thompson to register for these Team CF events: ethompson@cff.org or 312.236.4491

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