Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
Marissa Benchea, 37, is a volunteer. A fashionista. A lover of cats and a proud aunt to her two nieces and three nephews. She also has cystic fibrosis, a genetic disease that causes thick, sticky mucus to build up in her lungs.
Published on May 1, 2014
Marissa Benchea was awarded the 2014 Alex Award for herpositive spirit, dedication to the CF community and willingness to put othersbefore herself.
Marissa is very open about her CF but doesn't want to be known only for her battle with the disease.
“People know me as Marissa. I'm a vibrant, outspoken, spunky person,” she said. “CF is a huge part of my life, but it's not the only thing in my life.”
Marissa has held many titles as a volunteer for the CFFoundation. She currently serves as Tennessee’s state advocacy co-chair and isa member of the newly formed Adult Advisory Council.
That positive attitude touches everything and everyone Marissa interacts with and has earned her the 2014 Alex Award. Given annually by Frank Deford, chair emeritus of the CF Foundation Board of Trustees, in honor of his daughter Alex, the award recognizes someone with CF whose life is an inspiration to others.
For Marissa, winning the award was an experience she will never forget.
“The people who have won this award are some of my heroes in the CF community. They are the people I look up to,” Marissa said, referring to previous winners Mitch Greenberg, Beth Sufian and Stacy Motenko. “Winning the award was special, but being included among such an esteemed circle of people is what really touches me.”
As humble as she is, Marissa has the right to claim a title as a mover and shaker within the CF community.
A lifetime of service
Despite having to complete between three and four hours of treatments daily, she plays a critical role as a volunteer for the
Tennessee Chapter of the Cystic Fibrosis Foundation. She has served as the chapter's board president, state advocacy co-chair and has called attention to the challenges faced by Medicaid beneficiaries who have CF.
Most recently, she expanded her involvement with the Foundation by becoming a member of the newly formed Adult Advisory Council, which aims to guide the Foundation on the complex needs of CF adults.
Marissa, pictured here with her father, has CF. She and herfamily are long-time volunteers for the Tennessee Chapter of the CysticFibrosis Foundation.
“There are more adults with CF now than at any other time in the history of the disease. Our needs are as unique as we are, and I'm really proud to be a voice for this population,” Marissa said.
Marissa has a strong history of volunteering and has given her time to the local zoo, art organizations and immigrants new to her community. She also served on the board of the Young Leaders Council, an organization that trains young people to serve on nonprofit boards, and built a career in the nonprofit community.
“My first job was with a corporation. It didn't take me long to realize that I belonged elsewhere,” Marissa said. “Serving others has always been a huge part of my life, so I transitioned to non-profit work.”
Finding her place
Marissa was forced to make the most difficult decision of her life when she left her career to focus on her health. Making the transition from supporting herself to living on social security benefits was a painful process, and one that Marissa still struggles with today.
“I realize my body isn't the same that it used to be, and there came a point in my life when I was sick more than I was healthy,” Marissa said. “Even though I loved my work, I love my life, my family and my friends more. I need to stay healthy for them.”
Marissa explained that having to leave work made her feel lost and, for a time, she questioned her purpose. But giving back to the Foundation has allowed her to once again feel grounded in life.
“I'm a person with many interests and I like to have my hands in everything. Volunteering for the Foundation gives me the opportunity to participate in so many different activities - all on behalf of people I love and care about," Marissa said. “To me, the Cystic Fibrosis Foundation means family, community and a sense of belonging. Because of the Foundation, I know I am never alone.”
Marissa is determined to continue to do whatever she can to help support the family she loves.
“I will never stop volunteering for the Foundation,” she said. “I feel like I'm just getting started. I have so much more to give.”
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