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