RSS Feed

Tag Archives: cf

So Close, Yet So Far Away….

photo 2

It has been a long time since we have seen something so incredible happen in the medical world in regards to a cure for a disease. Over the years, CF has seen some amazing breakthroughs in medical research and drugs that have provided a positive impact of the life of a CFer. We have seen great drugs to hit the market that are specifically created and designed to assist in fighting a cowardly, but strong and aggressive disease. We have seen the miraculous drug, Kalydeco, impact the lives of CFers in a way that makes CF insignificant. And when that wasn’t enough, we fought even harder, and are now on the bleeding edge of a second drug that will basically cure another 60% of the CF population. All of this happened because we not only have a great foundation that is fighting the fight while we sleep, work and try to enjoy our lives as normal as possible, but because of the great support we have from family, friends and strangers who believe in us and our cause.

The bad news to this is that we aren’t done yet. Every CF warrior has made a vow to fight until CF stands for Cure Found. It may be simple to sit back when a “magic” pill comes along and removes many of the daily struggles of living a life with CF, but I know through the bond we have developed with each other through our weak moments and times of grief, we will stand by each others sides until the Cure is Found for all. And you may wonder what happens then, but I can assure you that these CF warriors will pick up something else and fight just as hard.

This is where I take a step back from praising the accomplishments of the CF community because of one small girl that came into our lives almost 2 years ago. Through all of the media, excitement and anticipation of the new drug on a fast track through the FDA, there are families like ours who are still sitting on the bench. We can’t help but be excited, but we are also still waiting on our turn. You see, Sutton isn’t a part of the either group that has or will benefit from the miracle drugs. Her genetic mutations don’t fit the make up. The hopeful part of it is that the amazing group of doctors and scientists are working towards the next miracle drug. No one knows for sure when that will come.

As I sit here an write this, I can hear a similar background noise that I hear every morning and night when I am at home. The dull roar of the “tickle vest” as we call it, the cry of a small girl who just wants to enjoy being 2 without the tether of a machine, a TV turned up just louder than the roar of the tickle vest so that it can help serve as a distraction to the never ending treatments. I often hear that Sutton doesn’t “look” like anything is wrong, but this silent disease does a good job hiding itself. I think many times we don’t even see the disease, but its those small reminders that we notice that keeps up paranoid enough to stick with treatments for 2 hours a day.


This year I will be getting close to what was the median life expectancy of a CFer at the time Sutton was born. In the last two years, we have watched it grow to 41 years old which applauds the medical accomplishments of the doctors dedicated to CF. I can’t help but reflect on what it would be like to only live to 41 years old. In so many ways, I feel like my life is just getting started. I married an amazing woman 6 years ago. I have two amazing kids, but they are still so young. I started the career of my dreams. Thankfully, I don’t have any reason to place a median life expectancy on my life, but one has been placed on my child. That is probably one of the hardest things to swallow.

photo 3 (2)

We have a chance though. There is great hope in Sutton’s future. There is more than just a dream for a cure, there is dedicated research with proven results already taking place. We are at a place in time when it is even more important to fight for a cure to CF, however, we can’t do it alone. We need your help more than ever to keep the momentum going to make Sutton the next recipient of a “miracle” drug.

photo 1

On November 8, 2014, I will ride in my third CF Cycle for Life since Sutton was born as a part of Team Sutton Grace. Team Sutton Grace has grown from 2 people and now consists of over 100 people actively participating through The Great Strides Walk and the CF Cycle for Life. Team Sutton Grace has grown because of the great support of family and friends and the support system surrounding each of us. We like to think of all of you as a part of Team Sutton Grace because we can’t be a success without any of you. There is nothing that can ever express the thanks to each of you for all you have done to support us.

Anne Frank once said that No one has ever become poor by giving. I promise you the greatness of your gift is felt by adding another day for Sutton. The life expectancy has grown from 37 to 41 since you all started supporting us. You are adding more tomorrows. I am asking for your support again this year to help Sutton, help me add every possible tomorrow we can.

With Humble Gratitude,

Jeff, Brittany, Hiatt, Sutton and Team Sutton Grace

To Give:


Get on your bikes and Ride! CF Cycle for Life, Nov 9 in Serenbe, GA

Posted on


It seems like we are constantly in a fundraising loop, but that’s what you do when you daughter has a genetic, life shortening disease, we find support to cure it!

We have wrapped up our fundraising for the 2013 Great Strides Walk and are now shifting into CF Cycle for Life.  Last year, Sutton was less than a month old when we participated in the CF Cycle for Life.  There was only two team members, JV and myself, less than 2 weeks to raise money and we weren’t even close to understanding anything about CF.  But we were determined and now, 7 months later, we are getting a head start on building a team and raising funds.  Team Sutton Grace is currently looking to add cyclists to our team in hopes of having one of the largest groups of riders in the history of the event.  We are looking for new riders, casual riders, pro riders, anybody that has a desire to jump on  a bike for a casual and non competitive 15, 30 or 65 miles.  It is in beautiful Serenbe Georgia and takes place on November 9, 2013, so the weather is perfect.  We will help get you set up and teach you everything you need to know to ride towards a cure for CF.  JV and I are dedicated to Team Sutton Grace and are here to support everybody who wants to ride.  If you don’t want to ride, you can still sign up as a virtual rider and come out to the event to hang out and have a good time with the team.

Brittany and I are on the Executive Board for Georgia CF Cycle for Life.  I truly believe it has nothing to do with my legs in bike shorts, but rather Brittany’s gift of fundraising.  The board is comprised of a great group of dedicated individuals hoping to take our chapter ride to the top of the chart for all of Cycle for Life across the country.  We are starting to look for sponsors for different levels and bring on teams and individual riders throughout the community of Atlanta.  We have several training rides that we will be sure to advertise and hope that many of you will join us for this amazing event.   If you know of anybody who is interested in riding, forming a team, or becoming a sponsor, be sure to contact us.  Thanks so much for everything you do to support Sutton, our family and all of those winning the battle against CF.  We won’t stop fighting until CF stands for Cure Found!

Fill out the form below if you are interested in joining the fight against CF!

***Having trouble viewing this form? Contact Team Sutton Grace