Dean's Great Strides Walk on Saturday May 16th

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

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

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)

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 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!

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!

 

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

 

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

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

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!

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"

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:

Register for the Orland Park May 17th Walk
Donate
Dean's 2014 Video
Email us
www.eatpraydean.com
 

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

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
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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.