Cystic fibrosis is a chronic condition that causes mucus to build up in the lungs, pancreas, and other organs. This causes trouble breathing, increases the likelihood of developing infections, and a wide variety of other symptoms, which vary from person to person. The condition is genetic, which means it’s passed from parent to child. In order to have cystic fibrosis, both parents must be carriers of the defective gene. The reason the condition is so complex and can cause varying symptoms, is because there are over 1,700 known mutations of it.
Cystic fibrosis affects about 30,000 people in the U.S. and over 70,000 worldwide. There are about 1,000 new cases diagnosed per year, and over 75 percent get diagnosed by the age of two.
Research is needed to discover better treatments and a possible cure. Because the disease is lifelong and can be life threatening, people with cystic fibrosis often need support to find proper medical care and other resources in their community.
When you donate to or seek help from a charity, you want to make sure it’s one you can trust. These seven organizations are doing an impressive job of raising awareness and providing help to people living with cystic fibrosis.
Boomer Esiason Foundation
Former NFL quarterback Boomer Esiason launched the Boomer Esiason Foundation in 1994 after his son Gunnar was diagnosed with cystic fibrosis. Today, it’s a top-rated Charity Navigator charity, receiving full marks in accountability and transparency.
The organization sponsors a variety of programs designed to help people in the cystic fibrosis community, including scholarships, transplant grants, educational videos, podcasts, and more. Gunnar Esiason also has his own blog, where he shares his personal experiences living with cystic fibrosis.
The Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is one of the largest and oldest non-profits dedicated to creating awareness and helping people with the disease. With a 4 star rating from Charity Navigator, it was founded in 1955 by a group of parents of children who had cystic fibrosis. Over the years, it has grown considerably, contributing largely to the research breakthroughs and the support available to people living with the disease. It has 70 chapters and funds over 120 care centers in the U.S. alone.
Research and financial support by the Foundation helped Vertex Pharmaceuticals Inc. develop the drug Lumacaftor, which in combination with ivacaftor helps improve lung function in people with the most common cystic fibrosis mutation, F508del-CFTR. The U.S. Food and Drug Administration (FDA) expanded its approval of the drug to include children ages 6 to 11 years old.
In 2016, the foundation also announced the opening of a new research facility dedicated solely to discovering advanced new treatments for the genetic mutation.
Cystic Fibrosis Lifestyle Foundation
The Cystic Fibrosis Lifestyle Foundation (CFLF) takes a different approach from more traditional charities. Its focus is on providing recreational grants to people with cystic fibrosis, so they can maintain a physically active lifestyle.
Founder Brian Callanan was diagnosed with the condition at birth. After realizing the positive impact that exercise had on him, both physically and mentally, he started CFLF to empower others living with cystic fibrosis and to help them gain access to healthy recreational activities. Since its beginning in 2003, the organization has given over 500 grants.
Cystic Fibrosis Research Inc.
Founded in 1975, Cystic Fibrosis Research Inc. (CFRI) is a top-rated charity on Charity Navigator. Although CFRI funds cystic fibrosis research, a large part of its efforts go toward creating and maintaining a community support system for cystic fibrosis patients and their caregivers.
The organization provides a monthly in-person support group run by a qualified social worker for CF caregivers. People who aren’t local can call in and join by phone nationwide.
Annual retreats sponsored by CFRI help people living with cystic fibrosis and their families connect with others going through the same challenges. CFRI also makes an effort to help Spanish-speaking families join its community by creating bilingual DVDs and newsletters.
Emily’s Entourage was born out of necessity. The foundation’s co-founder and namesake, Emily, has advanced stage cystic fibrosis and only 35 percent lung function. Current scientific research wasn’t focusing on treatments for her specific mutation, so Emily, along with friends and family, took matters into her own hands.
Since 2011, Emily’s Entourage has raised over $2 million for CF research targeting rare mutations. This year, her organization was profiled by CNN. Emily was also named a Champion of Change by the White House in 2015.
Mauli Ola Foundation
Brothers James and Charles Dunlop started the Mauli Ola Foundation in 2007 after reading an article in the New England Journal of Medicine citing the benefits of salt water for people with cystic fibrosis. Both Dunlops worked for the genetic testing company, Ambry Genetics, and were avid surfers. They decided to combine work at passion in an effort to help people.
The Mauli Ola Foundation connects people with genetic diseases, including those with cystic fibrosis, to surfing and other ocean-based therapies. In 2015, Quiksilver Pro Gold Coast, World Surf League athletes and Mauli Ola ambassadors joined forces to take a group of local children with cystic fibrosis surfing.
Rock CF Foundation
Emily Schaller started the Rock CF Foundation in 2007. As someone living with cystic fibrosis, Schaller found running to be a great help as part of her treatment plan. She credits the regular cardio with getting her lungs to their highest functioning capacity since her childhood.
Rock CF Foundation’s goal is to raise awareness about cystic fibrosis, fund research, and help those living with it experience a higher quality of life. The Foundation’s Kicks Back program gives running shoes to people with cystic fibrosis and pays registration fees for a race of their choice.
Emily and her foundation have been featured in numerous high-profile publications, including The New York Times, The Atlantic, and Forbes.