Cystic Fibrosis Awareness Month

Danielle Kiefer

Emily's Entourage, a non-profit organization dedicated to raising awareness for CF, has touched many people's lives.

By Danielle Kiefer, Features Editor

For most students, the month of May is usually filled with studying for AP exams, attending graduation parties and finally enjoying some warm weather. In addition to the usual May events, students should make sure to also participate in Cystic Fibrosis Awareness Month.

Cystic Fibrosis (CF) is a genetic disease that affects the lungs and digestive system. It causes a buildup of thick, sticky mucus in the lungs which can lead to life-threatening lung infections. Because relatively few people have CF, funding for research for a cure must be done by individuals and organizations.

According to the Cystic Fibrosis Foundation website, approximately 30,000 children and adults in the United States have CF, and about 70,000 worldwide.

The Cystic Fibrosis Foundation is based in Bethesda and funds more research for CF than any other organization, making it the world’s leader in the search for a cure. However, there are also many other CF organizations out there.

Emily’s Entourage is a nonprofit organization dedicated to raising awareness and money to help find a cure for CF. Emily Kramer-Golinkoff, the namesake of the organization and a 29-year-old living with CF, and her friends and family started Emily’s Entourage in December 2011 to help those affected by CF.

“Emily’s friends approached Emily’s family about forming a team called Emily’s Entourage to raise money for a Cystic Fibrosis Foundation event,” Emily’s mother Liza Kramer said. “Together we put together a generic letter and sent it out to all of our friends. Very easily and with little effort, we raised over $8,000. It made us think what could happen if we put some effort behind this, so we launched Emily’s Entourage.”

Both organizations do their part to fundraise research for CF. To expedite the process of finding a cure, the Cystic Fibrosis Foundation started a campaign called Milestones II to raise $75 million by 2015.

According to a Milestones II Update by Campaign Chair Joe O’Donnell, CFF has currently raised a total of $56 million towards their goal of $75 million.

“We think the CF foundation does fantastic work, and we couldn’t be more supportive and appreciative,” Kramer said. “In fact, Emily does a number of speaking and volunteer engagements for them.”

According to a May 2014 Emily’s Entourage newsletter, they have raised almost $300,000 this year, bringing total fundraising to $650,000 in the two-and-a-half years since their inception.

One of the most important and easiest ways to help with CF Awareness Month is to simply spread the word, whether it be through social media websites or just word of mouth. Although the focus of May is on raising awareness, donations are still welcome and vital. In addition, there are many events to participate in both during May and throughout the year.

The Cystic Fibrosis Foundation holds an annual walk called Great Strides, their largest national fundraising event. Walks are held at nearly 600 locations throughout the nation, including in Rockville, Bethesda and Washington, D.C. during May.

According to the Cystic Fibrosis Foundation’s 2012 annual report, over 125,000 people participated in Great Strides throughout the country and raised $39.7 million that year.

“Throughout the year, we are involved with many community events,” Kramer said. “We host a huge tennis event in February and are active in local Cystic Fibrosis walks and runs. We have an annual social media and email campaign which launches in December. We also have a huge gala in December.”

Emily’s Entourage encourages everyone to “like” them on Facebook and share things on social media to educate others about CF.

“We recognize the power of young people,” Kramer said. “We have a presence on five different college campuses.”

Some students are already involved with supporting research and raising CF awareness.

“Emily’s Entourage is an amazing cause relating to CF,” junior Marti Weiner said. “Emily’s family wants to do anything they can to enhance their daughter’s life, who is running out of time, and they are so grateful for all the help they are given.”