Final Reminder - Chillin' & Grillin' for a Cure Sat. 7/14 at 3pm

Dean-o at 2

The excitement here is rising!!!  We are ecstatic to welcome you to Chillin' & Grillin' for a Cure and wanted to send around one final reminder for the Block Party that we're hosting on Saturday July 14th from 3-10pm at 21831 yellow finch lane in Frankfort (60423).

Don't think of your typical block party, think BIG!  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.  The lucky chef will win the prized Chillin' & Grillin' trophy!!  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 50 spectacular baskets and items ready to raffle.  We mentioned some of them in our last email and the donations keep on coming - we guarantee there will be something for everyone.  And 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!

Don't forget to bring your little ones!  The street will be closed off and 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 (weather permitting), music by Poochamungas (a kids band) and caricatures, face painting, balloon artist by Art4Clowns, mini taekwondo sessions by ATA Frankfort and many other kids games to keep the little ones smiling.

Besides the basket raffles, we'll continue with raffles throughout the evenings (wine pull, 50/50, kids quick raffles, etc.) and we'll start the bean bag tourney as the DJs are starting and challenge your skills with some of the best we know on the S. Side!  The beer tent for those of age will be open as long as our supply lasts.  The general timeline is below and as mentioned, we're closing off the street so please plan on parking on Nebraska, Morning Dove or Blue Bird.

Thank you for all of the AMAZING help and support we've had so far and we're 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/

3:00 - Let the party begin!  Food and raffle ticket sales
3:30 - 4:00 Music for the kids by Poochamungas
4:00 - 6:00 Ribs and food served
4:00 - 6:00 - Caricature, Face Painting and Balloon Artist for the kids by Art4Clowns
6:00 - 6:30 - Music for the kids by Poochamungas
6:30 - Dessert station
7:00-10:00 - DJ
7:00 - Bean Bag Tourney
7:30 - Final call for raffles
8:00 - Basket Raffles, 50/50 (winner need not be present), Paddle pull raffle
Kids activities and games throughout the day.

Yes! Yes! Yes! Phase 3 of VX-809 & Kalydeco

Yes!  Such exciting and positive news announced last week about the clinical trials that are going on for Dean's mutation.

Here is the link to the article and I'll summarize the excitement:

A little science to explain what is going on...Cystic fibrosis is caused by the mutation to the CFTR gene which hinders the transfer of water and salt across cells affecting both the digestive and respiratory systems.  To manage the digestive system properly, Dean takes pancreatic enzymes before snacks, meals and milk since his pancreas doesn't produce the enzymens needed to digest fat.  On the respiratory side, oatmeal-like mucus is produced in the mucus producing organs and since last August, we've been giving Dean daily respiratory treatments to prevent a buildup of mucus in his lungs as well as thin any mucus that is making a home in his lungs.  We do this to help him breathe easier and because bacteria like to breed in warm, sticky environments and we're trying to prevent the bacteria from causing any damage to his lungs.  So, back in January, the FDA granted approval for Kalydeco, which is the first drug for CF that doesn't treat the symptoms but rather treats the disease by targeting the CFTR gene by helping to open the cell "gates" to allow better transport of ions across cell membranes.  Dean's issue though is two fold.  Not only do the cell gates not open but the protein can't even get close enough to the cell surface to get out!  So, the Cystic Fibrosis Foundation partnered with Vertex and developed a drug (now called VX-809) that they intend use to get the CFTR protein to the cell surface, where Kalydeco can then work it's magic, open the gate and allow for the correct flow of ions.  On Thursday, final results from the phase 2 clinical trial of the combination of these drugs were released which showed significant improved in lung function for patients that had the same mutation that Dean has.  Lung function is measured by how much air can be expelled from the lungs in 1 second.  Although Dean is too young to get measured for this now, these trials in CFers 18+ with the same set of mutations showed very promising results.  So, the next step is the pivotal phase 3 trial which will be the mose rigorous evaluation of the safety and efficacy of the combination of these 2 drugs in patients who have the double deltaF508 (in preparation for another FDA filing).

We are beyond hopeful and prayerful that God guides these scientists to continue making the future look bright for our son and so many others with this disease.  We are so thankful for all of your support and wanted to explain what $75million of research dollars can do for one little man and 30,000 other people in the United States alone.  It's the passion of the people that care so much to do everything to help us raise money that is allowing this to happen.  As a "orphan" disease, meaning one given very limited federal funding, the Cystic Fibrosis Foundation is at the mercy of private donations and the families and friends of those affected to raise money.  We truly won't stop until CF stands for Cure Found.  Thank you for helping us.  Our next fundraiser for Team Eat. Pray. Dean, Chillin' & Grillin' for a Cure is on July 14th from 3-10pm.  Please say you'll come and be a part of this amazingly huge part of our lives.  We thank God for you and for your kindness and your prayers.

With love and appreciation,
Jim & Erin

check out http://www.eatpraydean.com/ for the schedule of events on July 14th
email us at findacure@eatpraydean.com if you will join us and need a link to the evite
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Dean 2 years old

the awesome kids that will do anything to help Dean-o

"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)

Check out the lineup - don't miss Chillin' & Grillin'

Hi Friends,

We wanted to send out a reminder about our “Chillin’ & Grillin’ for a Cure” block party fundraiser to raise money for the Cystic Fibrosis Foundation.  As you know, we are striving to raise as much money as we can in the hopes of advancing research to find a cure for our little man.  Over 90 cents of every dollar donated goes directly to fund vital research and development.  If you didn’t get a chance, log onto our website (www.eatpraydean.com) to find out more about Dean and to watch him in his very own video.

Put in on the calendar and invite your friends and family to the Block Party at our place on Saturday July 14^th from 3-10 pm where we will have a rib cook-off, basket raffles, games and activities for adults and kids!  Below is a timeline of the events that we have secured so far.

Thank you,

Jim & Erin

21831 Yellow Finch Lane

773-580-3929

July 14th Chillin' & Grillin' Schedule of Events

9:00 - Fire up the smoker and start cooking your ribs!
3:00 - Let the party begin!  Food and raffle ticket sales
3:30 - 4:00 - Music for the kids by Poochamungas

4:00 - 6:00 - Ribs and food sales

4:00 - 6:00 - Caricature, Face Painting and Balloon Artist for the kids by Art4Clowns

6:00 - 6:30 - Music for the kids by Poochamungas

6:30 - Dessert station
7:00 - Bean Bag Tourney
7:30 - Final call for raffles
8:00 - Basket Raffles, 50/50 (winner need not be present), Paddle pull raffle

Kids games and activities will take place throughout the day

Time TBD:  ATA Frankfort will host some mini Tae Kwon Do sessions for kids and adults

There is still time to show off your grillin’ skills – we have 6 competitors.  Let us know by June 30^th if you’d like to join the Rib Cook-Off.  The rib cook-off portion of this event is sponsored by our friends from the Glen Ellyn Backyard BBQ Competition. Although a non-sanctioned event, this is for all teams, regardless of skill or competition experience, to compete, raise money for a great cause and either gain experience or try out new recipes and techniques.  Contestants must provide all their own equipment and bring 5 slabs of Pork Ribs (spares or baby backs) and ingredients. Charcoal and gas grills/smokers are welcome. A “boat” will be provided for each dish. Teams may arrive as early as 9:00 AM and begin cooking and setting up if you will cook your ribs here.  Rib Tasting will begin at 4 P.M. and will conclude at 6 P.M. or whenever you are out of ribs.  We will only sell 50 tickets to taste the ribs — with each tasting equal to 1 individually cut rib from each contestant. Each ticket sold will also include a vote for the best rib.

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http://www.cff.org/

http://www.eatpraydean.com/

The winner of the Cubs/Sox raffle is...

We had an awesome weekend running the warrior dash, dancing away to a family wedding and celebrating the most important men in our lives on a special Father's Day.  We ended the weekend with Dean pulling the winner for the tickets to the Sox / Cubs game that we sold to raise money for the CFF.  We thank Karen for donating those tickets and for all of the people that supported us and purchased tickets!   Check out the video below to see who won...

Here are a few more pictures from the rest of our weekend...



Warrior Dash 2012



Congratulations on your wedding Tony & Shannon!

And a salute to the best Dad's in the world!


The world's largest Peanut in GA!



Pelican Beach in Florida 2012

Obba

Grandpa

Save the Date for the Chillin' & Grillin' for a cure Fundraiser Block Party on July 14, 2012 3-10pm.  Check out http://www.eatpraydean.com/ for details.

Save the Date for Chillin' & Grillin' and Cubs/Sox Raffle

We are trying something new this year; something more relaxed and our style.  We’re going to host a Block Party on Saturday July 14^th from 3-10 pm and we would love to have you join us as we are “Chillin’ & Grillin’ for a Cure.”  This isn’t just any block party, it is a fundraiser that we are hosting to raise money for the Cystic Fibrosis Foundation.  Along with help from many of you already, Team Eat. Pray. Dean has raised over $50,000 in the past two years.   We are striving to raise as much as we can in the hopes of advancing research to find a cure for our little man -- a cure that is truly within reach.  Log onto our website (www.eatpraydean.com) to find out more about Dean and to watch him in his very own video.

This awesome day will include a rib cook-off (entry deadline by June 30th if you're interested), basket raffles, games and activities for adults and kids.  Stop by for the day or for just a few hours – we’d love your support!  Help us plan for food by giving us your RSVP via this evite link:  http://new.evite.com/#view_invite:eid=026ANC2ZTL7RSYAS4EPBVLPPOUYR3Q

Next up...we have tickets to the June 19 7:10pm Sox/Cubs game at US Cellular that we are raffling off for $25 each.  You will win 6 seats (section 149) including parking pass!! Dean will pull the lucky winner this Sunday. Email/call us if you are interested in buying a raffle ticket.  Thank you to Karen and her hubby for graciously donating these to us!

Finally, if you missed our Great Strides thank you, you can read it here...we're still working on putting the pictures together but will have them all ready after the Block Party.  Team Eat. Pray. Dean in Maryland had their walk this past weekend and we're grateful for the crew that supported us and walked for Dean in Ellicott City, MD Great Strides.

Thanks for all of your unending support!

Happy 4th Birthday Evie Dorothy!

What a week!  After an amazing Great Strides celebration last weekend, we celebrated Evie's 4th birthday on May 21st.  We had a playdate, tie-dyed shirts with Owen at school, opened some gifts (she loved her new pet shop toys and her very own gumball machine).  Evie was an easy, easy baby who smiled non-stop, a true gentle little one.  Slowly she is turning into an independent, self-confident, amazing little girl with a passion for everything athletic.  She'll sit down and play a game with you but would much rather play tag, run with dad or ride her two-wheeler, which she taught herself how to do last fall because she was tired of waiting for me to get outside.  She never ceases to amaze us, has a way of figuring things out if she doesn't know how to do something and doesn't like to wait for anyone when she knows what she wants.   She loves to be outside and ended her fourth birthday with a 1/2 mile run with dad (while sporting her new running shorts)!

Evie has been taking Taekwondo since December 2011 and tested during this busy week for her yellow belt.  Owen started in February 2011 and tested for his green headband.  You can tell the exhaustion from a busy week setting in for Evie in the middle picture.

Evie testing for her yellow belt

Owen sparring for his green headband

New ranks

Evie's last day of preschool came and she sang with her class during the end of the year program.  A great ending to an amazing year of growth and amazement for Evie.  One of the cool things about this class is that Cali, Owen and Evie all got to go through it with the same teacher.  One of the most patient teachers I have ever known that Evie has learned so much from.  She felt comfortable enough with them this year to tell her that one of her nicknames for dad is gorilla!

Evie in Mrs. Floyd's Early Learning Class

To end school and kick-off summer the preschool hosted a end of the year ice-cream social for the whole family...good times...yummy ice cream!

Evie & her friend Riley

 

Dean & OJ


 

Cali & Hannah

We started the weekend with a family party to celebrate the big day, complete with a bag of goodies from creative toy mart, a new wardrobe, her very first "bikini" (which is really a tankini but she doesn't realize that...yet), a fun sprinkler and a bear bigger than her!  She didn't mind that Dean got right into her cake!



Happy 4th Evie!

We ended the weekend with a little memorial day celebrating with some great friends (of course the kids outnumber the adults).  The kids take a while to warm up to each other but after a few hours, they're all playing like best friends.  Since the 90 degree heat was too much for the little ones in the jumpy, the dads set the jumpy up inside! 

Happy Birthday week little sweet cheese!

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Great Strides 2012: Synergy

On Saturday May 19th, we gathered together for our 2012 walk to celebrate all the success we've had raising both awareness and funds to find a cure for Cystic Fibrosis.  Dean was a bit overwhelmed with the magnitude of attention at times and even chose to take his nap a little early:

Dean napping on Obba

I've been thinking about the best way to express what it felt like for us to be in the middle of this outpouring of support and I'll reuse my post from FB:

smiling...grateful...awed...humbled...blessed

There is a fantastic quote that I heard recently that sums it up for every single person that reaches out in their own way to help our little man: 

To the world you may be one person, but to one person you may be the world.

~ Josephine Billings

We are overjoyed and sincerely thankful for each and every call, text, email, kind word, financial donation, in-kind donation, assistance with and at our fundraising efforts, managing fundraising events for us and your help in raising awareness by asking your family and friends to support our quest for this Cure.  We thank our friends, family, their friends and family and our sponsors.

I found that quote above in a book called ONE which is about the idea that one person can make a difference.  There is a great part in the book which reminds us that if you combine two or more good-hearted people in pursuit of a common cause, and suddenly 1 + 1 is more than 2.  The synergy working here is what will make all the difference in the world for us.  You are significant in this fight.  You have a talent, a connection, a kind word and contribute critically to helping us fight for Dean and 30,000 others in the U.S. 

The amount of money raised for Eat. Pray. Dean in 2012 will exceed the goal we set up initially but more importantly we are raising awareness.  Group cohesion talks about the property that is inferred from the number and strength of mutual positive attitudes among members of the group. Beyond appreciation, I'll fill you in on what Jim and I "get" from this team and your help.  We are:

• lifted up by how Eat.Pray.Dean is growing and increasing in interactions, in comunications, in size
• ecstatic and humbled by people banding together for this common interest
• excited for the new friendships we have formed in the midst of such a disease
• comforted by the fact that old friends and family don't get tired of hearing us talk about how very close we are to finding a cure
• thankful for the amount of people who took a chance and shared our story with their family and friends and in turn raised more than we could have imagined at this stage of the game
• ecstatic that we have sponsors willing to connect their company with our cause
• grateful for the opportunity to share our family with each of you
• invigorated knowing that we have such a strong team working alongside of us
• hopeful that a cure will come in his lifetime
• blessed by a God who trusted us enough to place this fighter in our care. 

So in closing, you play a significant role in this cure.  We thank you and will continue to thank God for you.  Oh, the number?  You're probably interested in where we stand right now!  We set a goal of $28k, after all the outstanding $'s from the past few weeks are entered, we're at $28,062!!!   Besides just the walk, many people helped us in various ways with fundraisers of their own.  To check out these stories: 
http://www.eatpraydean.com/2012-fundraising-stories.html.  If  you're outside of Illinois, we've successully had Kalena take our team out west this year and Marie out East.  We'd love to expand our team in 2013 with your help.

If you missed one of our last posts, check it out here...it shows how even though the drug released last January will not help (by itself), plans are that drug synergy (this word is all over the place :) ) will work together to benefit Dean in the future.  To read the positive results about the clinical trial:  Baby Stepping to a Cure

We have a draft "thank you" created in word and Adobe (thanks Annmarie) that you can use if you would like to write thank you's to the people that supported you via your fundraising page.  This means so much to us and we will send that out to you separately. 

Finally, as you can tell, we cannot stop.  How could you if you knew you were so close to fixing your little boy?  Save the Date for Chillin' & Grillin' for a Cure - Saturday July 14th 3-10pm.  We will need help pulling this one off, and please let us know if you are interested.  Otherwise, please come and relax with the family and have a great time knowing that you are helping make a difference.

Our fundraising page is still open through the year:  http://www.cff.org/Great_Strides/JimandErinBurns

With so much love,
Jim, Erin, Cali, Owen, Evie & Dean

We captured abut 175 but estimated about 200 people supported us on 5/19/2012

Jim, Erin, Cali, Owen, Evie & Dean

We have an amazing amount of pictures and all are so great, we had a hard time picking a few to show so are working on posting for all to see, will let you know when we're done with those.

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