Dear Family & Friends:
For the first time, the median predicted life expectancy for a child born with Cystic Fibrosis today has reached 56 years. This has more than doubled in the last 3 decades.
There are some fantastic highlights we want share with you.
CFTR modulator therapy available to patients/ Trikafta is available for children ages 2 years and older, Kalydeco( is available for a 1 month old baby and older, Orkambi 1 year old and up, and Symdeko is available for 12 years old and older. Kalydeco is the medication that Sophia and Savannah have been on since 2015.
Our Drug Development Pipeline has more the 40+ therapies with more than ever before number of collaborations with biotech and venture capital firms resulting in 35 major industry research programs focused on genetic science, allowing us to boldly advance our Path to a cure initiative.
Continue ambitious initiative “Path to a Cure” - ensures development of new therapies that cover a range of new technologies, including mRNA therapies, nonsense mutation therapies, gene therapy and gene editing for an eventual cure for ALL people with CF. In 2019 it was announce that $500 million will be allocated to these efforts thru 2025.
Continued Infection Research Initiative launched in 2018 with $100 million dedicated from 2019 -2023 to a comprehensive effort to improve the detection, diagnosis, treatments and outcomes of CF related infections.
Continued strengthening of our “Multidisciplinary care model” - Care Center model to support people with CF where they are on their journey, with a focus on continuous improvement based on data and evidence. We now have 130 CF care centers nationwide.
The CF Foundation announced this week that it has invested an additional $5 million in BiomX to support a Phase 2b clinical trial to test the effectiveness of it bacteriophage therapy in treating chronic Pseudomonas Aeruginosa Infections - the second most common type of lung infections in people with Cystic Fibrosis. Phage therapy uses phages or bacteria-specific viruses to kill specific bacterial strains. Sophia and Savannah have both had pseudomonas infections at which time they have been hospitalized for treatment. This infection normally remains in the body.
Now for the updates on Sophia and Savannah. Sophia has become involved with the Academic Bowl Team at school and performed for the Mamma Mia Musical. Savannah has begun school soccer which helps expands her lungs and breathing. Both girls have been relatively healthy, NO Hospitalizations this year, we are always thankful for that. Their checkups with the CF Care Centers have seen improvements in their lung functions. We are blessed to have your support and even though they are healthy we still need your support to continue the research to find a CURE for Cystic Fibrosis.
The link below will allow you to sign up for the Cystic Fibrosis Walk on May 4 and/or to make a donation.
It may say not a secure website, however it is secure. Not sure why this has happened. I am checking into it.
fightcf.cff.org/goto/gayleflorio2024
Love the Fighting Florios
Event: Wichita
Date: May 4, 2024 |
Location: Exploration Place | Wichita, KS | View Map
Chapter: Heart of America - Kansas City, heartofamerica@cff.org, 816-832-2979
Check-in: 9:00 AM | Walk: 10:00 AM
Connect With Us
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.