
For too long, cystic fibrosis, a rare, genetic disease, has robbed people of tomorrows - progressively limiting their ability to breathe and tragically shortening life. There are approximately 30,000 Americans living with CF. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease.
As many of you know Franky was diagnosed with CF when I was 12 weeks pregnant. Chris and I have no family members with CF but both are carriers of this rare disease. We feel so special to have been blessed with Franky. We are so grateful to be living in a time where we are so close to a cure. I know that we will get there someday.
The first year of Franky's life has been amazing !
But it hasn't been easy! The first few days of life Franky continued to lose weight, which happens in most of the people who share the same mutation as Franky. At this time they tested his stool and found that he had pancreatic Insufficiency, meaning he has a hard time absorbing fats and proteins. Due to this he has to take pancreatic enzymes every time he eats fats or proteins. Right now Franky is taking about 16 enzymes a day. He also takes multivitamins and probiotics. Franky has moved on from his manual percussion to a vest. Which right now he is enjoying very much because it means he can watch coco melon, Barney, or Sesame Street. When Franky is 2 he will be able to start on a modulator! But those modulators aren't enough! Franky still will need all his meds and to continue with his respiratory interventions. It is not a cure, but it is one step closer. Please help us raise money and awareness for CF, so someday Franky and 30,000 other Americans can see a cure.
I walk for them. Will you join me and support my Great Strides fundraising goal?
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short.
By walking with me in Great Strides, you can help accelerate the Foundation's pursuit of new therapies and provide vital support to meet the needs of the CF community.
Please support me!
Your participation will help us get one step closer to ending this terrible disease. Let's make CF stand for Cure Found.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.