We have some exciting news to share with you!
As you know, CF is a genetic disease that causes a thick sticky mucus to form on the lungs and digestive system which can lead to difficulties breathing, risk for infections, lung damage, and digestive issues. This is a life threatening disease and the current life expectancy for someone with CF is early 40’s.
Jeff and I are both carriers of a defective CF gene (which we didn’t know until I was pregnant). In order for someone to have CF, both parents must have the defective gene and in that case, there is a 25% chance of both defective genes getting passed on to a child.
What complicates this even more is that there are more than 1,800 different mutations of the CF gene so there isn’t just one ‘cure’ for CF due to the complexities of the mutations.
Sutton has 2 different mutations (one from Jeff and one from me). One is F508del ​(which is the most common mutation) and one is G542x (which is more rare).
The story below is announcing that the Phase 3 trials for those with 2 of the F508del mutation are complete and an application to the FDA is will be submitted by the end of the year.
About 50% of people with CF have 2 copies of this F508del mutation so if this all goes as planned, we will be closer to a ‘cure’ for about 15,000 people in the US with CF. WOW!
Because Sutton only has one copy of the F508del mutation, this doesn’t directly affect her, but it is getting us one step closer to a cure as the trials and research continue.
We would not have these amazing advancements without all of YOUR continued support to fund this life saving research.
Team Sutton Grace has raised nearly $100,000 in just 20 months and its because of YOUR commitment to fight and walk on this journey with us, we really are one step closer to a cure. The story below has more details if you are interested in reading it.
Thank you again from the bottom of our hearts for all of your encouragement and support.
This announcement is ALL the more reason that we will continue on this journey and fight for our sweet Suttsy girl and others with CF everyday.
We WILL find a cure and will do it with you in our army.
Thank you more than you will ever know—
Brittany, Jeff, Hiatt and Sutton
65 Rosebuds 