I never realized how important it was to share my family's story of cystic fibrosis until I started participating in Teen Advocacy Day. This experience helped me find my voice.
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According to social worker Kim Reno, removing critical health care protections in current law would be devastating for people with cystic fibrosis and their families.
Advocacy efforts to raise awareness about cystic fibrosis and ignite change don’t just happen on Capitol Hill during events like March on the Hill and Teen Advocacy Day. In fact, advocacy is a continuous effort that begins, and is highly effective, at home.
The Congressional Cystic Fibrosis Caucus unites bipartisan members from both chambers to raise awareness for CF; support CF research, drug discovery, and development; encourage collaboration between the public sector and private organizations; and support access to quality, affordable care for people living with CF.
Anxiety is a normal emotion that comes and goes in response to fears or worries about changes in health, work, relationships, or money. A person is said to have an anxiety disorder if the anxiety does not go away, gets worse over time, and prevents a person from participating in daily activities.
Spending so much of my childhood in and out of the hospital and doing CF treatments was already enough to deal with, so it felt easier to keep my mental health challenges hidden. However, speaking up about my feelings helped me learn that caring for my mental health is as important as taking care of my physical health.
The Cystic Fibrosis Foundation, alongside the CF community, urges Congress to pass the PASTEUR Act and the HELP Copays Act.
In 1955, the Cystic Fibrosis Foundation was founded by a group of concerned parents who wanted to raise awareness of CF. The strength of the CF community has driven forward incredible advancements in research and care. It’s important to remember that one voice can make all the difference.
Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients.
Alongside the cystic fibrosis community, we advocate for policies and programs that promote access to highly specialized CF care and that help advance research and drug development.