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May is Cystic Fibrosis Awareness Month

Cystic Fibrosis Awareness Month is an annual event to promote education and help find a cure for a disease that affects more than 35,000 Americans.

Photo: Oleksandr Pidvalnyi

May is just around the corner, which means it’s time to celebrate Cystic Fibrosis Awareness Month. 

 

Around 35,000 people in the U.S. are living with cystic fibrosis (CF). Another 10 million are symptomless carriers, meaning they don’t have cystic fibrosis but can pass the gene for this disease on to their children.  

 

Cystic fibrosis is a progressive disease that causes the body to produce thick, sticky mucus that damages the lungs and digestive system. The symptoms of cystic fibrosis can vary widely from person to person, but many individuals with cystic fibrosis may have a persistent cough, frequent lung infections, and trouble with breathing that gets worse over time. 

 

When cystic fibrosis was discovered, children diagnosed with the disease were not expected to live beyond elementary school. Adults with cystic fibrosis are now living long enough to attend college, get married, and have kids — thanks in large part to advances in care made possible by funding and awareness raised through Cystic Fibrosis Awareness Month. 

History of Cystic Fibrosis Awareness Month

  • 1938: Dr. Dorothy Andersen publishes the first description of cystic fibrosis in medical literature 
  • 1983: Surgeons perform the first lung transplant for CF  
  • 1989: Scientists discover the CFTR gene responsible for cystic fibrosis 
  • 1993: FDA approves Pulmozyme, the first drug designed to treat to treat CF 
  • 2006: Representatives Edward Markey (D-Mass.) and Cliff Stearns (R-Fla.) launch the CF Congressional Caucus 
  • 2010: All 50 states institute newborn screening for CF  

 

Cystic Fibrosis Awareness Month has been a national event for over a decade. It grew out of advocacy efforts by the Cystic Fibrosis Foundation (CFF). 

 

CFF was founded in 1955 by a group of concerned parents who were determined to save the lives of their children. The Foundation wanted to advance care for cystic fibrosis and raise more research funding for this disease. Funding raised by CFF was crucial to the development of drugs like Pulmozyme, as well as the discovery of the cystic fibrosis gene. 

 

In 2007, CFF organized March on the Hill to bring greater attention to the need for cystic fibrosis research funding through the National Institutes of Health (NIH), U.S Food and Drug Administration (FDA), and other federal research agencies. The following year, Congress officially designated May as National Cystic Fibrosis Awareness Month. 

 

Since it was first celebrated, Cystic Fibrosis Awareness Month has grown into a nationwide event. Thousands of people participate in fundraising walks around the country, or wear purple to show their support. 

 

Thanks to the efforts of CFF, scientists, elected officials, and individual citizens who participate in Cystic Fibrosis Awareness Month, individuals born with cystic fibrosis today can expect to live into their 30s or 40s, with some living much longer. 

 

While people with cystic fibrosis are living healthier lives than ever before, there’s still more progress to be made. CFF wants to end cystic fibrosis altogether, and they won’t rest until there’s a cure. 

6 ways to support Cystic Fibrosis Awareness Month

Not sure what you can do to help raise awareness and end cystic fibrosis? Here are some ideas:   

1. Wear purple

The color purple represents cystic fibrosis awareness. During the month of May, advocates and individuals living with cystic fibrosis show their support by wearing purple t-shirts, bracelets, and ribbons. Some even host purple tie galas, where guests dress in purple and enjoy a gourmet meal to raise money for cystic fibrosis research. 

Group of women wearing purple dresses standing in front of a banner that says Cystic Fibrosis Foundation Adding Tomorrows.
Attendees wear purple for The Indiana Chapter of the Cystic Fibrosis Foundation's annual Purple Tie Ball. (Source: CFF)

2. Share the facts on social media

Educating people about cystic fibrosis is one of Cystic Fibrosis Awareness Month’s most important goals. The more people know about cystic fibrosis, the more supporters and advocates there will be. With over 4 billion active users worldwide, social media offers a powerful opportunity to reach and educate a large number of people. CFF provides a huge range of facts, statistics, and videos about cystic fibrosis that you can share on your social media network. Be sure to use the hashtag #CFAwareness to spread the word!  

3. Change your Facebook profile picture

One small but meaningful way to raise awareness about cystic fibrosis is to change your Facebook profile picture. It might not seem like much, but something as simple as adding a frame or filter to your photo has been proven to help boost visibility and spread the word about an important cause. You can find frames by going to www.facebook.com/profilepicframe and typing “Cystic Fibrosis Foundation” in the search box.  

4. Sign up to be an organ donor

Although treatments have come a long way, some people with cystic fibrosis may eventually need more advanced care, including a lung transplant. Lung transplants do not cure cystic fibrosis, but they are an important treatment option for people whose lungs have been damaged by CF.  

 

Becoming an organ donor can make a difference in the lives of up to 75 people, including someone with cystic fibrosis. Signing up to become an organ donor is easy and can be done online or when you renew your driver’s license. 

A Facebook post showing a young blonde girl in a purple tshirt making muscles with a blue circular frame surrounding the image that says "Cystic Fibrosis Awareness Month" and "Until CF Means Cure Found".
An example of a Facebook post from 2021 using the CF Awareness Month frame. (Source: Facebook)

5. Create CF-inspired art

This could be done in many creative ways. For example, you could grab a pack of sidewalk chalk at the dollar store and draw a purple ribbon along with the words “Cystic Fibrosis Awareness” outside your home. Or, you might gather your team to create a window display at your office or community center. 

6. Participate in a fundraising walk

Every year, CFF chapters around the country host the Foundation’s signature Great Strides walk. Participants have walked over 58,000 miles and raised over $5.7 million for cystic fibrosis research. Find a walk near you. 

Download the free Disability Events calendar

No matter which way you choose to participate in Cystic Fibrosis Awareness Month, your support is sure to make a difference for people living with this disease. For more disability-related events and observances you can participate in all year, download our free Disability Events Calendar.

Free Resource: 2023 Disability Events Calendar
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