a different kind of perfect

i'm a mom...on a mission...to enjoy life everyday...appreciate the little moments...try not to get so easily annoyed...raise my kids with a faith legacy that leads them to continue to be amazing people...and to make my husband feel as special as he makes me feel.

What is Cystic Fibrosis?

CF is an inherited chronic disease that affects the lungs and digestive system of about 30k children and adults in the US (70k worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that both clogs the lungs and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. [www.cff.org]

Tuesday, June 24, 2014

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

Saturday, June 21, 2014

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.


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 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