Keynote: Making Every Breath Count
Friday, September 20 at 7:00 p.m. ET
St. Thomas, US Virgin Islands
BreatheCon 2019 Co-chair | Session Moderator
Chelsea is a 26-year-old adult with CF, diagnosed shortly after birth. She currently lives in the US Virgin Islands and is a yoga teacher. She uses her CF as motivation to dream big, see the world, and live life to the fullest every day. Chelsea’s goal is to share her journey with others out there to give them hope, motivation, and be an example that CF does not have to be the defining factor of who you are or what you are capable of. Follow Chelsea on Instagram @Salty_Yogi.
Tyler loves golf and won a state championship while in high school. He lives in Bountiful, Utah with his wife Camille. Tyler is graduating in psychology this year from Brigham Young University and will be applying to graduate school this Fall. He started a company called Chronically Salty Clothing to try and raise awareness for Cystic Fibrosis while also donating proceeds to the CFF every month. Tyler enjoys being outside and tries to be as active as he can be to enjoy every day to the fullest. You can find him outside on a hike or playing sports with his friends and family. Follow Tyler's adventures on Instagram @mycflife.
Mary Frey is an adrenaline-loving 30-year-old CF patient who is determined to find joy in each day. She and her husband, Peter, love to make the most of every day, whether in the hospital, out on the boat, or having a simple day at home. Mary has moved several times in the past 10 years and experienced healthcare at numerous CF centers in Maryland, Illinois, Massachusetts, and Scotland, and she is currently in the midst of relocating to North Carolina. Mary and Peter document everyday life with Cystic Fibrosis on their YouTube channel, The Frey Life. They aren’t afraid to show the good, the bad, and the ugly… because that’s real life. Follow Mary on Instagram @Freyliving.
Rima loves hiking and eating pizza. Rima is now 2.4 years out from her double lung transplant and loving life more than ever before. Prior to transplant she was on oxygen for almost two years and had two dry runs during her eight months on the list. She now uses her new ‘air bags’ to adventure and camp all over Colorado. Rima’s goal is to hike in every national park now that she is physically able to! She is also on a quest to find the best pizza wherever she goes, and even occasionally makes it from scratch, dough and sauce! In Denver Rima is part of the advisory board for the CFF Rocky Mountain chapter and participates in a lot of their events. You can follow her adventures on her blog, Instagram, Facebook, and Twitter.
Friday, September 20 at 9:15 p.m. ET
BreatheCon 2019 Co-chair | Session MC
Somer was diagnosed with cystic fibrosis at 11 months in 1980. She tries to live each day to the fullest by keeping her hopes high and dreams big. Somer is an active advocate in the CF community, and created Love To Breathe® in 2001 to educate and raise awareness about Cystic Fibrosis and spread love whenever she can. Follow Somer on Love To Breathe.
Michael, 35 years old, is a 2 1/2 years out from receiving a double lung transplant. Stand up comedy has always been on his bucket list and now, with his second chance at life, he'll do just that.
Andy Lipman, 45, has cystic fibrosis, but cystic fibrosis will never have him. Andy is a positive role model, who defied all odds to become a college graduate, Olympic-torch bearer, runner, author, husband, and father. Andy is dedicated to finding a cure for this invisible, terminal disease. He and his family founded the Wish for Wendy Foundation in memory of his older sister, who died from CF after only 16 days of life. As of 2019, the foundation has contributed nearly $4,000,000 to help raise awareness for cystic fibrosis and fund research for a cure.
Fort Myers, FL
Danica Murray is 18 years old and from Florida. She was diagnosed with CF at age two, and has been kicking ever since! After a life threatening decline this year, she received a double lung transplant. She currently attends college and acts in regional theater productions. She holds acting credits with the Florida Repertory Theater, The Lab Theater of Florida, and Florida Southwestern State College. She was the second place winner at the Laugh in Comedy Club's stand up show. She is enjoying writing, directing, and acting in whatever she can!
Will Ryan, 26, is a 2003 Woodrow Wilson 5th Grade Science Fair winner from Bayonne, NJ. In the summer of 2014, at the age of 21, Will entered the world of stand up comedy after he realized that no one really cares about poetry. To his parents' chagrin, he graduated from Saint Peter’s University with a political science degree, demonstrating a clear love of the open job market. He’s a former co-host of “Back of the Class Podcast” with his best friend Kenny Williams. The podcast ended when the cheap bastards realized it actually costs money to make a podcast. He’s performed through New Jersey and New York City to packed venues of 50 people. He currently lives with his fiancee, Gina, and their two dogs, Otis and Ruby. Later this year, he’ll be releasing a live compilation album on bandcamp entitled, Spelling Arugula Salad on the Bus.
Emily Schaller, 37, is a heroine with one goal in mind, to Rock CF.
Equal parts spark, wit and humor, Emily is claiming her victories against cystic fibrosis having launched the Rock CF Foundation in 2007 to heighten public awareness and raise funds to increase the quality of life for everyone with CF. Emily created and manages an internationally acclaimed line of merchandise to help fulfill the mission of Rock CF. Today, Emily’s battle against this deadly genetic disease is printed in Runner’s World, FORBES, The Atlantic and SPIN magazines, the New York Times, The Washington Post, USA Today, NPR and posted on Competitor.com, Shape.com, the Associated Press, and various cystic fibrosis focused educational websites. She is a marathon running, super teacher and a speaker, addressing parents, patients and audiences about the effects of cystic fibrosis and the ever changing and improving treatments being made. Through Emily’s humor and personal experience she inspires the masses to transform their lives with exercise, diet and goal setting.
Keynote: Research and Science Update
Saturday, September 21 at 1:00 p.m. ET
Michael Boyle, M.D., FCCP
Dr. Michael Boyle is the Senior Vice President of Therapeutics Development at the Cystic Fibrosis Foundation and Adjunct Professor of Medicine at the Johns Hopkins Hospital. In January of 2020 he will assume the role of President and CEO of the CF Foundation. Dr. Boyle joined CFF in 2015 and currently oversees the development programs of new CF therapeutics as well as the CF Foundation’s Therapeutic Development Network of 92 academic medical centers. His major focus is the conduct of clinical trials designed to result in new therapies for individuals with CF. Dr. Boyle comes to CFF from the Johns Hopkins School of Medicine, where he was involved in CF care and research for twenty years and was the Director of the Johns Hopkins Adult Cystic Fibrosis Program.
Marissa Benchea lives in South Louisiana with her two cats and collection of plants. She was diagnosed at birth with CF and attributes being alive to her dedicated parents, incredible clinical teams, her friends and her CF family. Marissa is a patient advocate and is passionate about raising awareness and funds for cystic fibrosis. In 2016, Marissa co-founded BreatheCon with her peers and loves being connected to the online community through virtual events. She has spent the past ten years in two different clinical trials, and her free time is spent with her 5 nieces and nephews, gardening, exercising, and being a cat mom. You can follow Marissa on Instagram @kissoffcf or Twitter @MarissaBenchea.
Keynote: Adjusting to Life as CF Changes
Saturday, September 21 at 5:00 p.m. ET
Katie Fielding is a 38-year-old with CF in Alexandria, Virginia. She has been a high school educator for 16 years. Recently she became a Google Innovator where her project involved advocacy for chronically ill children in the school setting. In addition to her love of technology, she is an avid traveler; having visited over 25 countries. Connect with Katie on Instagram @Katief.
North Smithfield, RI
Steven is a 47 year old proud father of a beautiful 8 year old girl named Meah. He was diagnosed at 18 months old and at the age of 44, received a double lung transplant. Steven graduated from Rhode Island College and New England Institute of Technology with degrees in technical fields, and will be going back to school to study Physical Therapy. Steven now lives in North Smithfield, Rhode Island and is a volunteer member of the Board of Directors for the RI Chapter of the CF Foundation, a member of the planning committee for the RI CF Cycle for Life (where he also rides), a mentor for the CF Peer Connect Program and the Lung Transplant Foundation, and is the founder of the Breathe4Steve Links Fore Life Golf Tournament, which raises money for the CF Foundation. He makes every breath count with activities like playing golf, riding both mountain and road bikes, playing and doing things with his daughter, and anything else he can to stay active. You can connect with him on his Community Facebook page Breathe4Steve or his personal page Steven Greenough.