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 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. She has a second 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 several years now, an oral medication that is made specifically for one of her gene mutations. When she turned six, her Kalydeco changed from granules to pill form, and she now does a great job taking a rather large pill twice a day!
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. Many people with CF are now able to use a triple-modulator therapy, Trikafta, (there are over 1700 mutations, so some drugs work for specific mutations only) that has improved their lung function and has improved their daily quality of life. This game-changing medicine was made possible by Vertex with financial support from the Cystic Fibrosis Foundation. This is just one of the amazing results of donations to the Cystic Fibrosis Foundation. However, there is still no cure for CF and many people living with CF, like Natalia, have rare gene mutations and do not qualify for Trikafta. The Cystic Fibrosis Foundation is committed to supporting the creating of these kinds of life-changing drugs for people with rare CF mutations too, and this is why we need your continued support. 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.