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