Fundraising to find a cure for Cystic Fibrosis for our little man
View this email in your browser
Save the Date for the 2019 Chillin' & Grillin' for a Cure on Sunday September 22nd from 12-5pm
Yellow Finch Lane in Frankfort
Hello Friends & Family! We are in the final weeks before the 2019 Chillin' & Grillin' for a Cure! Invite your friends and family and join us for games, activities, music, food, drinks, auctions and more at this fun-filled day.  All profits go to the Cystic Fibrosis Foundation.

We have a chicken wing cooking competition and some awesome chicken wing chefs lined up to compete for the C&G 2019 Chef. If you want to join in, choose your team name and register by the 13th. For those that prefer baking, the cookie bake-off is on again and we can't wait to try your creation!

Tickets are available for purchase online at $20 per person ages 3+ with a $75 family rate through 9/13. Afterwards, tickets will be available for $25 per person the day of the event. For the latest details, to purchase tickets and to register as a chef, go to

We will be reaching out soon to pick up the baskets from those that have offered. Email us with any questions! 
Schedule of Events
12:00 - 1:00: ​Wing Cook-off tasting
12:00 - 1:30: Face painting / tattoos
12:00 - 4:00: Baskets / Auctions
  ​1:00 - 5:00: ​BBQ Food/Drinks
​  1:30 - 2:00: ​Storytelling
  2:00 - 3:00: Organized kids games
            3:30: Desserts
            3:30: ​Kids Horse Race
​            4:30: Basket winners announced

All Day:​
Bouncy, Drinks, Music, Photo Booth, T-shirt sales
Click here for event details
Thank you to our awesome sponsors who are helping us get closer and closer to a cure!  
After our last clinic appointment, actually the day after, a medication called Symdeko was approved for children age 6-11 with CF that have the mutations that Dean has. This is the first combo medication that we were considering starting him on. We were pumped and talked to the doc and decided that on our next clinic, at the end of Sept, we would leave clinic with a new script for this life-changing modulator and corrector combo that helps reduce the symptoms of CF (for more details and a video see here).  
Shortly after that, the same company that has pushed forth much of these game changing meds, Vertex Pharmaceuticals, announced a triple combo med, which combines Symdeko with another med to provide additional benefits for those with Dean's mutations and early data is proving "better" than the one that we had decided to put him on.  Super exciting. open label clinical study is announced, of which Dean would qualify, for this triple combo med!!!  After hearing our doctors opinion and wanting to make this work for Dean (really wanting to get him on as soon as possible), we went to register Dean less than 24 hours before we saw the announcement, only to find out "Because of unprecedented interest, the Trial Finder “participate” button has been deactivated on this study. It is unlikely that study sites will accept participants beyond those who receive care at their site..." Given that Dean isn't a patient at the site here in Chicago that is hosting the trial, he's unlikely to get in. Ugh.So.Close. We first thought maybe it wasn't the right timing for him but we really think it is and will exhaust all our options to see how we can make this one happen. Say a prayer that if Dean should be on this, we will find a way. UNTIL IT'S DONE, THOUGH, we will be Chillin' & Grillin' for a Cure and we hope you will join us or consider a donation if you can't make it. 
Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list

This email was sent to <<Email Address>>
why did I get this?    unsubscribe from this list    update subscription preferences
Eat. Pray. Dean · CURECF · INDEANSLIFETIME, OK #1047 · USA

Email Marketing Powered by Mailchimp