People with cystic fibrosis have a higher level of salt in their sweat, which can be tasted through kisses, and even on their skin. So when it came time for Megan Richman '14 to name the booklet in which she profiles nine exceptional athletes who suffer from the terminal illness, its titleThe Salty Taste of Victorywas a play on words, but also a reminder of the bittersweet glory that comes with their achievements.
Richman profiled the athletes while interning this summer with the Northern Ohio chapter of the Cystic Fibrosis Foundation. Although not very knowledgeable about CF going into the work, she wanted an internship at a nonprofit, "where I would truly be able to make an impact," she says. When director Nate Cross extended an offer, Richman called it a perfect fit. Raised in Highland Heights, a suburb of Cleveland, the chapter was just 30 minutes from her housea perk coupled with meaningful work.
Richman's profiles of the young, extraordinary athletes living with CF can be found on the chapter's landing page, by scrolling down to the "In the Spotlights" tab. In the words of CMC's Thomas Poon, who is Richman's professor of organic chemistry, "She took her volunteerism to the max, combined it with a research project, and created a publication that gave voice to nine people with cystic fibrosis, allowing them to tell their stories of how sports have impacted their lives."
Richman is a dual biology and Spanish major, and a proud member of the CMS women's volleyball team. She is sending the new booklet to various CF chapters, doctors, and organizations around the country in order to raise awareness. Just as she wrapped her summer work in Ohio, she was happy to take questions about her chapter work: CMC: What inspired you to work with the CF Foundation? And how are you acquainted with the disease? Richman: I came into this not having a full grasp of what CF was. I had no previous connection to it. The director, Nate Cross, called me after I e-mailed the foundation and said they would love to have me, as they had just five staff members and could use the help. I wanted to work with a small nonprofit organization to be able to truly make an impact, and the Northern Ohio Chapter turned out to be a perfect fit for me. CMC: Whose idea was it to profile the athletes? And, how did you go about identifying and/or researching them, and conducting the interviews? Richman: The original idea came from Dianna Graves, the former volleyball coach at CMS. I had planned to interview a CMC football alumnus and several volleyball players, to relate to me being on the CMS volleyball team, but I could not get in touch with the football alumnus or find any volleyball players with CF. The staff at my chapter connected me with two local athletes, Maria Znidarsic (a high school soccer player), and KC Bryan White (CFF Trustee, who does just about every sport, and coaches lacrosse at a local high school). Our director did a mountain biking race with Team CF and was able to connect me with Kaitlyn Broadhurst and Emily Schaller. The other athletes I found by reading stories on CF athletes through the Team Boomer and Club CF websites. For interviews, I developed about 12 questions and modified them to each person's life and previous accomplishments. I called each person and conducted the interviews on the phone, which usually lasted for about an hour. CMC: Was it your idea to determine the role exercise played in their diagnosis and overall health? If so, does that correlate somehow to the work you do as a science major? Richman: Since my original plan wasn't possible, I just began interviewing the athletes and listening to their life stories. Once I read all of the inspiring stories on Club CF and Team Boomer, exercise became the obvious similarity between each of the athletes; exercise turned out to be a broader category that could fit for more of the athletes. The science behind CF was an actual real-life application of what I learned in my biology and organic chemistry classes. CMC: You're a talented writer. Was this an easy assignment for you, in that regard? Richman: Thank you! I thought the project was going to be easy, but after speaking with each of the athletes, I put a lot of pressure on myself to do them justice, since each athlete has such an incredible story. The writing part took a lot of time with countless re-edits, but I was so motivated to share these stories that the words just flowed out once I got started. CMC: Of the athletes you profiled, did any particular person stand out most, or affect you more than the others? Richman: All of the athletes were interesting and unique in their own way. My conversation with Danny Ferrone, a 28 year-old from Chicago, who trained for the Ironman, ran marathons, and went to Europe to work with the Italian Cystic Fibrosis Research Foundation, was the most memorable. He is fighting CF every single day in order to continue living, and I could feel his passion for life through the phone in his words. Danny is the epitome of a fighter. He has accomplished great things for the CF community and seems like a very modest, kind, and generous person. CMC: What did this project teach you, and how (if at all) will you apply it to your own athleticism and academics at CMC? Richman: This project has taught me how valuable time really is. Some of these athletes don't know how much time they have left, and that is a very scary thought and reality to live with. I feel like I found something in medicine that I could possibly pursue, that would give me real purpose.
About cystic fibrosis
Cystic fibrosis is a chronic disease affecting the lungs and the digestive system of about 30,000 children and adults in the U.S., and about 70,000 people worldwide. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s, and beyond.