Natalia was diagnosed with Cystic Fibrosis (CF) through the newborn screening and we found out when she was 10 days old. Despite this devastating news, Natalia is a happy, active little girl and we're doing all the recommended preventative treatments to keep her healthy. Just looking at her you would never know about her condition and we are fortunate that she has been so healthy and not suffered any CF related problems thus far. Natalia's current preventative treatments include 15-30 minutes of CPT (chest physical therapy) using her shaking vest while doing Albuterol breathing treatments, both twice daily, and up to four times a day if she's sick. About 2 years ago we added a new inhaled medication, Pulmozyme, which she does once a day to help break up any mucus in the lungs. She also has been taking Kalydeco twice a day for a few years now, an oral medication that is made specifically for one of her gene mutations.
The Cystic Fibrosis Foundation is a wonderful organization that helps people living with CF in so many ways, most importantly by conducting research to find a cure. They are very close to being able to use a new triple-modulator therapy for many people with CF (there are over 1700 mutations, so some drugs work for specific mutations only). Read more about the CFF and about CF below.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. I walk for them and hope you will support me in my efforts.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families. Please join us for the day, or even become a virtual walker! We would love to have you join our (virtual) team!!
Please support us!
Help us reach our fundraising goal by donating to our Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.