Take Action: How to Become a Cystic Fibrosis Advocate

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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How to Become a Cystic Fibrosis Advocate

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Patients and loved ones affected by the burden of cystic fibrosis (CF) may want to take action and do something to fight this chronic and progressive disease. However, it’s not always easy to find ways to do so. Becoming an advocate for cystic fibrosis may be an option for some people. Learn some tips on how to become a cystic fibrosis advocate, as well as finding out more about the work currently being done by the advocates at the Cystic Fibrosis Foundation (CFF).

Learn more about cystic fibrosis patient Ben Mudge, who made it onto the Men’s Fitness cover, taking him one step closer to his dream of becoming a Calvin Klein model.

Tips for Speaking as a Cystic Fibrosis Advocate

“Your voice has the power to inspire action and help shape public policy. Learn more about how you can help make a difference in the mission to cure CF,” says the Cystic Fibrosis Foundation. “Telling your story is all about making a connection with elected officials. By making your story the focus of your meeting, the problems you are presenting and the solutions you are asking for become more relevant and meaningful.”

  • Speak Plainly: When telling the story of cystic fibrosis, it is important to remember that not everyone in the audience may be familiar with it. Therefore, it may be helpful to avoid medical or legal terms, abbreviations, and policy language.
  • Speak From the Heart: It may be difficult to tell a personal story, but adding an intimate experience to a policy debate can help make it more familiar and cause an emotional response in the audience.
  • Show Improvements: It is important to give hope to others by pointing the way toward improvements, meaning that an advocate should show concrete evidence how people can benefit from the option being advocated.
  • Maintain Interest: The speech of an advocate should be interesting, which can be done by including details that can help the audience picture what is being described.

Know more about advocate opportunities with the CFF by visiting this website.

Recently, an innovative research center providing tailored physical activity and exercise regimens for young people with cystic fibrosis (CF) has been launched with support for the Cystic Fibrosis Trust.

Ongoing CFF Advocacy Work

“The Cystic Fibrosis Foundation gives a voice to the CF community at federal and state levels by advocating for policy changes that help people with cystic fibrosis live longer, healthier lives,” according to its website. The Cystic Fibrosis Foundation is currently working on three different types of advocacy in which anyone can participate. The foundation has achieved several milestones over time through its advocacy programs.

  • Ensuring Access to Clinical Trials Act of 2015 (EACT): The CFF is currently working on the bipartisan EACT, which aims to make permanent the law known as Improving Access to Clinical Trials Act of 2009 (IACT) that enables people who suffer from rare diseases to more easily participate in clinical trials.
  • “21st Century Cures” Initiative: Another focus of the CFF is this focus on the development of policies to accelerate the discovery, development, and delivery of new treatments to patients with conditions such as cystic fibrosis.
  • Social Security Disability Programs: The CFF is fighting against changes to the criteria for eligibility for disability benefits that were proposed by the Social Security Administration (SSA) in February 2013. CFF fears the changes may halt or slow cystic fibrosis patients’ opportunities for disability benefits.

Discover more about the CFF current advocacy efforts and previous achievements by visiting this site.

Learn more about these 9 celebrities who were diagnosed with cystic fibrosis.

Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.