Foundation
What group created the CF Foundation?
A group of determined parents!
Approximately how many people in the US are living with CF?
35,000-40,000
What year was Grampions founded?
2019
What year was the first modulator (Kalydeco) therapy approved?
2012
What is the medication called that people with CF take before meals if they are pancreatic insufficient?
Enzymes
Lexington/Boston, MA
Approximately how many people are living with CF worldwide?
105,000
What event started in 1989 and is our most widely attended fundraising event across the nation?
Great Strides
Roughly how much of the CF population are now adults?
60%
What was the first drug created to specifically treat CF?
Pulmozyme
What year was the Foundation created?
1955
What are 3 major organs that are primarily affected by CF?
Lungs, liver, pancreas, intestines, sweat glands, reproductive system, heart, kidneys
What department handles staying up to date and involved in all things related to state and federal government?
Policy and Advocacy
What year was the CFTR gene discovered?
1989
What year was Trikafta first approved?
2019
Who pioneered the Foundation's successful venture philanthropy model - this has been a game changer in CF research and drug development.
Dr. Robert Beall
What is the most common CF mutation? This accounts for roughly 80% of the population.
F508del
What team can help CF families navigate insurance, financial troubles, storm damage, coverage questions, 504 plans, etc?
Compass
What year was the universal newborn screening for CF instituted in all 50 states?
2010
How many CFTR modulator therapies are currently available?
5: Alyftrek, Trikafta, Symdeko, Orkambi, Kalydeco
Who is our current CEO and president of the CF Foundation?
Dr. Mike Boyle
Name 5 common symptoms of CF.
Salty skin, persistent cough, frequent lung infections, shortness of breath, poor growth/weight gain, greasy or bulky stool, nasal polyps, chronic sinus infections, clubbing of fingers and toes, rectal prolapse, male infertility
This non-fundraising-centered program brings together people who care deeply about the mission of the CF Foundation. They can be grandparents, aunts, uncles, parents, neighbors, etc. They are relentless in their pursuit of a cure - they get the job done! It's often referred to as THE BEST GROUP EVER!!!! :)
GRAMPIONS!
This doctor, in 1938, published the first characterization of cystic fibrosis. Before this, doctors believed children were dying of severe cases of celiac disease.
Dr. Dorothy Andersen, MD
How do scientists believe CF will be cured?