Saturday May 19th: Great Strides Agenda

Hello!!!  We are so excited that there are only a few days left until our 2012 Great Strides event at Centennial Park in Orland Park!  Here are the details you'll need - we are so looking forward to celebrating with you and seeing you there!  We know how very blessed we are to have been helped by you! 

WHERE & WHEN

• Saturday May 19th at Centennial Park in Orland Park
• The event takes place on the North end of Centennial Park directly across from the 153rd St. Metra station, where free parking is available (10401 W. 153rd Street).  
• Our set-up crew will get there about 9am to set up tents and tables. 
• Please arrive at 10:30 to begin the celebration.  Coffee, snacks and a DJ will kick off the event. Our team is registered so join us by the Eat. Pray. Dean table, sign the guest book, get some info and hand in any last minute donations you have/may have received and enjoy some snacks, friends and fun.
• 11:00 – 2:30   DJ, Jump Slide, Stilt Walker, Home Depot Craft Activities
• 11:45 – 12:00 Opening Remarks
• 12:00 - 1:00   3 mile walk/stroll around the park.  Bring strollers, scooters, wagons for the kids - this isn't a competitive walk, more like a stroll in the park!
• 1:00 – 2:30pm Lunch, Closing Remarks

WHAT TO BRING

Sunscreen or an umbrella (depending on the forecast).  Strollers, scooters, wagons for the kids.  Bag chairs or picnic blankets (there will be people staying back to man the station while we walk so chairs and blankets will be safe to be left near our site).  Feel free to bring extra water to stay hydrated in the event the mid-80s that is forecasted actually happens!

ADDITIONAL INFORMATION

There will be vendor booths that you can explore during the festivities and a brief ceremony before the walk. 

Thank you for everything you have done to help get us to this point.  We're looking forward to celebrating this amazing year of fundraising with you.

If you are unable to join us on Saturday but would still like to donate, please visit our page: 

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

Email us with any questions! 

With gratitude,

Jim & Erin

p.s. - save the date of July 14th (3-10pm) for our next event...Chillin' & Grillin' for a Cure

Baby Stepping to a Cure

Yesterday, preliminary data was released from studies in patients with two Delta f508 changes (mutations) that show promising improvements in lung function. Good things are happening here and we are happy to share that Dean is homozygous for the Delta f508 mutations. The good news is that lung function is improving in the trial participants (which is the goal of CF therapies).  If you read this article, you'll see that they are unclear why sweat chloride levels (a key indicator in the diagnosis of CF) in these studies has not improved with this drug combo but hopeful that the final results of the study will prove more promising and enough to move it forward.

I don't know what to think. I'm boggled by the fact that we're in the here and now, somewhere in middle America, dealing with this disease that is so very close to being fixed.  Dean has years before he can benefit from these results but O M G if it all works out and he does?!?  I will simply be amazed. Faith carries you through so much and when faced with the oasis during your struggle, you want to grab and hold on and pray your heart out that it turns into reality.

So I'm going to pray twice as hard, consider buying stock in Vertex :) and will continue raising money so they can get to the results we need.   As I refuse to sit and let CF define our lives...we're trekking on.  

So, thank you to you all...for helping us fundraise in so many different ways:  helping us pull together all of our fundrasiers, for branching off and raising money for us on your own, for sending out links to your friends and family to help us expand our reach, for sending up the prayers to the big guy and for raising awareness alongside of us.  We hear stories all the time about how Dean came up in conversation and they shared his story, his website, his struggles and we so very much thank you for keeping it going.  Our first Great Strides event in Reno, NV took place last weekend, and thanks to Aunt Kalena for fundraising, taking our team west and raising awareness in San Raphel park!!

Team Eat. Pray. Dean Reno, NV (5.5.12)

Each of you and your work and efforts are helping us turn this mirage into a reality; you are the reason we are able to successfully contribute to this fight. Dean is the reason we do it but our faith, family and friends are the way we do it. Continue to pray for Dean, for those scientists, for the money managers at the CFF, for the people in the clinical trials and for every single person that we are reaching.

It's never to late to help us cast our net...please join our team in fundraising for our cure - we could really use your help in sending out a page to your family and friends. Many many thanks!

Join us on May 19th for our Orland Park Great Strides event

Sign up as part of our team and cast your net

Join us on June 19th for our Ellicott City, MD Great Strides event

Save the Date for our Chillin' & Grillin' for a Cure event (July 14th)

Read the article prompting this blog!

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San Raphel Park, St. Patrick's Grove



San Raphel Park Labryinth

Happy 2nd Birthday Buddy!

Happy Birthday Dean-o Shean-o Cappuccino!



I loved my birthday brownie!



Two years ago today I can vividly remember the crazy feeling of being so unbelievably excited that you were going to join us. We knew right from the start that you were different from your older siblings, all born on the 21st of different months and here you come out on the 30th. 

You are hilarious; you know how to joke around.  At such a young age, you know a simple moo will make us chuckle.

You are loving; you give hugs in the morning, run to greet Cali and Owen when they walk through the door after school, and Gaga when he comes home from work and I love those little legs and how they sprint to give me a great giant bear hug when you first wake up.

You are kind; after your milky in the morning, you warm my heart when you insist on bringing Evie hers (even when she's still sleeping).

You are strong; I tear up the few times when you cry to take off your vest, but I'm in awe the 90% of the time when you work the machines and take the treatments without a whimper.

I loved that you watched ELF about 100 times this winter and that you're rotating now through Toy Story and Joseph and the Amazing Technicolor Dreamcoat. 

I love that you're best buddy is Obba and that you get so excited when you wear a blue shirt like him.

I love that you call your big sister Cali Mama, your big brother O.J. and we're so close with Evie...from EE to EB.

I love that you follow Evie around and miss her dearly when she's at school. 

I love that you get so excited seeing a fish; that you literally shake with excitement when a dawwgy comes near and get even more excited when it licks your hand.

I love you buddy, you're my littlest man and there are days when I can't stop thanking God for the gift that you are to all of us.  Birthdays are special but every single day with you is just precious.

Some pictures from Dean's day today...

Starting off the day with a game

My sisters decorated my door!

Opening some gifts

Still smiling at bedtime!

 

 If you haven't had the chance to see Dean's 2012 Fundraising video and contribute to our Great Strides fundraiser, please check it out at:  http://www.cff.org/Great_Strides/JimandErinBurns

Once a year we're shufflin'

Today, we had a beautiful sunshine-y morning for a run through the streets of Chicago. Ten years ago we ran our first Shamrock Shuffle 8K and it's the one race we try hard to run each year.  We run it with enthusiasm (well at least Jim does) and vigor and absolutely love the feeling afterwards. Jim ran 9 out of the last 10 years, me...well, a few less.  To be honest, I frequently complain about running, always choosing to never have time for it, always making an excuse why I can't fit it in but I so enjoy how great of a feeling of accomplishment it is when I'm done.  And believe it or not, it was actually fun today.   Although not easy.  I don't recommend the training for an 8K in 20 days and I don't recommend a few glasses of vino the night before a race so my goal this morning wasn't to set a PR but to actually run the entire 5 miles.  After the earbuds fell out and got tangled right before mile 1, I wasn't sure I was going to make all 5 but mile marker 2 and 3 came and I was quite proud of my endurance.  I even managed to drink a few sips of water without stopping or spilling it entirely on my face.  At about 3.5 miles in though, I almost stopped....I was talking myself out of it.  I could only repeat I can do all things through Him who gives me strength so many times.  But low and behold, right as I was about to give in, there was a spectator on the sidelines that looked right at me, noticed my shirt and yelled "go team CF, you're doing great!"  I wanted to cry. So many thoughts ran through my head:

You're so right. I.AM.DOING.GREAT!
I can do this. 
I have the ability to run, why would I choose to give in?
I'm in the middle of it, more than halfway done, it's not that much longer.
If Dean can deal with limited lung function on a daily basis, why can't I deal with the "pain" for 5 miles? 
What would Jim think if he saw me walking (haha...)

So I kept going.  I did it for all of my kids so they know how important it is to keep your body healthy...after all it is the "most magnificent machine you'll ever be given...take care of it" (per karyn). 

So I kept going.  I did it for Jim, so he'd be proud of me.

So I kept going.  I did it for me, so I could be proud of me.

So I kept going and I finally realized that all throughout our lives, even the simplest of things, the kindness of those we know and love and that of those we don't know are our motivators, our little pieces of gold in this life, our angels, to keep us going.

Thanks to O's for watching the kiddos while we enjoyed our night in the city and our running day, to Jim for the encouragement, the love and the laughs when my training doesn't quite live up to yours (and for setting your PR today - what motivation for 2013), to our kids for giving me a reason to take care of myself and finally to that random lady on the street for helping me to keep going for the last 1.5 miles - you're all a little piece of gold from above.

Save the date...come out and join us on Saturday May 19th in Orland Park for our Great Strides walk/picnic!  For more details and to help us reach our goal, visit:  http://www.cff.org/Great_Strides/JimandErinBurns

we both set a PR at this race!

Click to subscibe to this blog by email

Happy St. Patrick's Day!

There's some simple things in life, things that make you smile when you have the best of times or the worst of days.  To me that is the sillies above.  Keeping it short and sweet today...enjoy your day, your year, your life:

May you live a long life
Full of gladness and health,
With a pocket full of gold
As the least of your wealth.
May the dreams you hold dearest,
Be those which come true,
The kindness you spread,
Keep returning to you.

And a cool little reminder...

He who loses money, loses much;
He who loses a friend, loses more;
He who loses faith, loses all.

To donate to our Great Strides fundraiser, visit:  http://www.cff.org/Great_Strides/JimandErinBurns


2012 Fundraising Campaign Begins

Everyone has a cause, a person in need, a family, a church, a school.  This is our cause.  We are raising money because we are so prayerful that our cure will come soon.  We refuse to let Cystic Fibrosis define Dean and our family, and although we always have it on our mind and we continue to raise money for that cure, we will never lose site of just how precious of a gift we have in Dean as a person, as our little man, as our son.  Check out this video to see just why we want to share him and our hopes with you:  Dean's video.

 

For the second year, we will be participating in the Cystic Fibrosis Great Strides fundraiser and Walk on May 19, 2012 in Orland Park, Illinois.  This is an annual fundraiser for the Cystic Fibrosis Foundation and we can really use your help...

• Help us fundraise by signing up via our Great Strides site (it's super easy and would expand our reach beyond our wildest dreams)
• Make a monetary donation (if you're going to fundraise for us, make your personal donation on your page)!
• Bring Eat. Pray. Dean to a walk in your area (we're going National!!!  Eat. Pray. Dean will debut in Maryland this year - we'd love to be where you are too!)
• Finally, check out our personal website:  we have raised some money already this year, have events going on now, more events planned this year and have a blog to keep you informed throughout the year of Dean's health.

We are so amazingly thankful for each and every bit of help that we receive.  Thank you for sticking with us, for caring, for truly making a difference in the lives of so many and one in particular that is so undeniably courageous in every possible way.  We will leave you with this ending to our prayers that we pray for our kids each evening...May you wake up tomorrow morning with a smile on your face and God's love flowing through you.

 

Thank you,

Jim & Erin

 

 

 

"God is not unjust; he will not forget your work and the love you have shown him as you have helped his people and continue to help them.” ~Hebrews 6:10 (NIV)

65 Roses

I've always loved carnations.  I'm not sure why, maybe because they are more cost effective than other flowers, maybe because they don't have thorns, maybe just because they last longer or just maybe because everyone seemed to just get roses and I just didn't always want to be like everyone else.  I've always thought of flowers as happy things:  as gift of love, of happiness, of appreciation, of congratulations, something to get on Valentine's day.  But there are stories, legends, associations of flowers that don't always bring such a happy image to mind, such as one Christian legend of carnations appearing on earth from Mary’s tear at Jesus’s carrying of the cross or a Korean legend about placing flowers on a young girl to determine when her hardship in life will begin.  The last story I heard about flowers made me tear up, so I'll share, it's called 65 Roses. 

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.  After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.  He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."  [sis'tik fībrō'sis...since then the term "65 Roses" has been used by children of all ages to describe their disease.]

I've been thinking about this a lot lately.  Dean has no idea what he has.  He does not know he has a disease, he does not know why he has to do his treatments first thing when he wakes up.  He has no clue about why those little red and blue capsules have to go down into his belly with his food.  He just does it.  He does it because we tell him to, we sit there with him and he has faith in us that we will do what is right for him.  Of course he doesn't consciously think of this complete trust - he just does.  There are so many times where I wish I could be just like him, just do, just trust, just have complete faith to know that it will all be all right.  I try so hard to trust completely but I think too much, I fail and I need concrete evidence sometimes.  I need to see it, smell it, hear it, feel it.  I have a faith in God that I feel could move mountains, but I so long to just see those mountains move.  Last week, praise God, one of those mountains moved and I was here to see it. 

On Jan 31, 2012, the FDA approved a drug that targets the cause of CF in patients with a certain mutation (G551D), and tries to fix what's going on at the cellular level; it will significantly improve the quality of life of 4% of the US CF population - that's about 1300 people that will benefit from over 10 tireless years of the Cystic Fibrosis Foundation parterning with the developer (Vertex) and providing significant scientific, clinical and financial support (approx $75 million).  I mention the money because I want you all to know that every dollar that you raise or help us raise goes towards funding research and development.  We are so happy for the kids and adults out there that will benefit now from this new drug (Kalydeco).  Cheers to them and their families; to all of the caregivers out there that will see improvements in their health, their loved ones health and the quality of life that they will see increase.  That mountain was moved. To read more about this drug, follow this link. 

This breakthrough motivates me to raise more money, to do what we can to make sure that the next phase of what is out there now will help Dean. In fact, word is that Dean will be able to benefit from Kalydeco along with another therapy that is in phase two of clinical trials.  Also, some major partnering with Pfizer and the CFF can't hurt in the hunt for a cure for CFers with the mutation that Dean has.  I know it can be done.  I have faith that it will be fixed but faith doesn't just mean sitting back.  It means praying and doing everything that I can.  Doing what we can now means one fundraiser at a time.  I really want this mountain to move so I pray and will continue to tirelessly raise not only our family but as much money as we can with the hopes that Dean won't even have to learn to say "65 Roses" to describe his disease.  I won't hide it from him, but I truly pray that soon, for us, the rose will go back to being just another flower associated with Valentine's Day.

keep up to date with dean:  http://www.eatpraydean.com/
sign up on our 2012 Great Strides team and help find a cure:  http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7708&idUser=460312

Dean at 22 months