Jackie Bessette is wife to CF patient Danny Bessette. Married in July 2010, Danny and Jackie have navigated a relationship with Cystic Fibrosis, a double lung transplant, and now advanced lung disease complications. Although this road has not been easy, it has developed the strength of their marriage, faith, and determination to live life as purposely and fully as possible. They reside in Ashburn, Virginia where they both enjoy careers in industries they are passionate about, are entertained by the antics of their dog, Quinlan, and are eagerly awaiting the arrival of their first baby in March. You can follow their journey from pre-transplant to now on Jackie’s blog Have A Little Faith in We and they both enjoy sharing their story and providing support for the CF community through their work with the CF Foundation and Children’s Organ Transplant Association (COTA).
Dr. Dellon is an associate professor in pediatrics at the the University of North Caroloina School of Medicine. She is a pediatric pulmonologist and palliative care physician, and is the medical director of the Children’s Supportive Care Team, the pediatric palliative care program at the North Carolina Children’s Hospital. Dr. Dellon graduated from the University of Minnesota Medical School and trained in Internal Medicine and Pediatrics at the Harvard Combined Medicine-Pediatrics Program in Boston. She then completed fellowship training in Pediatric Pulmonology at the University of North Carolina and received a MPH degree in Epidemiology from the UNC School of Public Health. Dr. Dellon has expertise in the care of children with respiratory disorders, pediatric lung transplant, and palliative care for children with any medical condition. Her research interests include palliative care for children and adults with cystic fibrosis, and treatment decision-making for people with chronic respiratory diseases.
Jen was diagnosed with CF at the age of 12 months. After college she worked with teenagers for a number of years followed by working as an accounting assistant until she had to stop working due to her health. She was listed for a double lung transplant in July of 2016 at the age of 45 and received her new lungs 5 months later. She raises money for the CFF through Great Strides and is a national board member of the Lung Transplant Foundation. She lives with her husband Pete and her adorable dog Tarly and enjoys karaoke and Zumba.
Danielle Mandella is a 33-year-old writer and filmmaker living with cystic fibrosis in Sacramento, Calif. She received a lung transplant in 2003 at age 16 years old. She is currently receiving photopheresis treatment for C1 Chronic Rejection, which have been successful in stabilizing and improving her lung function. She continues to advocate for Cystic Fibrosis and Organ Donation causes locally and nationally. In her free time, Danielle enjoys seeing live music, playing guitar, reading, eating, and napping.
Kasey Raffensperger was diagnosed with CF when she was 4 and a half years old and three years ago, received a lifesaving double lung transplant. Kasey's transplant has allowed her to starting living my life again; in 2018, Kasey married her college sweetheart and six months ago they moved to the NYC area with their puppy Reilly. Kasey is a member of the CFF Transplant Consortium at Hopkins and was part of the focus group that created the Transplant Guidelines.
Patrick Smith is an associate professor in Psychiatry and Behavioral Sciences at the Duke University School of Medicine. Dr. Smith played a critical role in the recently published Lung transplant referral for individuals with cystic fibrosis: Cystic Fibrosis Foundation consensus guidelines, including leading focus groups of people who have experienced the transplant process. Dr. Smith is interested in the impact of lifestyle interventions, such as diet and exercise, on neurocognitive function and mood. He has also published multiple studies examining the relationship between cardiovascular disease, major depressive disorder, and neurocognitive outcomes, preoperative predictors of postoperative delirium, the impact of cardiothoracic interventions on neurocognitive outcomes, and the relationship between patterns of dietary intake and cardiovascular outcomes. He is also interested in the role of modifiable risk factors, such as physical inactivity and psychosocial stress, on clinical outcomes in solid organ transplant recipients.
Rod Spadinger, 47, was born and raised in Hawaii. Three years ago, he moved to Dallas, Texas, to undergo a double lung and liver transplant in August 2017. From the age of 4, until he was diagnosed with multiple sclerosis as a junior in high school, he ran at least five miles a day in order to keep his lungs clean. Rod’s exercise routine now consists of nearly daily visits to the gym. Inspired by the Lord and his angel donor, Joni Marie, who provided him with her gifts of life, Rod published the memoirs of his post-transplant journey, and celebration of this second life, in the book “A Collection of 50 Stories Inspired by my Angel Donor, Joni Marie.” He is currently compiling a subsequent publication. Rod recently founded a nonprofit organization, Ashleigh’s Life Foundation (www.ashleighs.org), with a mission to provide a degree of financial assistance for those at end stage CF. Connect with him on Facebook under his name, and on Facebook at Cystic Fibrosis Artists; Two New Lungs, One New Liver – A Year and Beyond with Cystic Fibrosis; and Cystic Fibrosis Road Warrior – Ashleigh’s Life Foundation.
Joe’s wife, Lisa, has CF and had a lung transplant in October 2015. Joe started dating Lisa in 2002 and married in 2010. Joe has been by Lisa’s side through the last 17 years with Lisa being healthy, sick, really sick, and then through transplant. Lisa is now four years post-transplant. Through this journey, Joe has often struggled with his role. Sometimes he was caregiver, advocate, and protector. In the more difficult moments he would take on role of savior, martyr, hero, or victim. Joe has settled on the fact that he is a deeply caring (albeit flawed) husband to Lisa, his beautiful wife and equal partner.
Isabel is a bereavement social worker at Mission Hospice, where she counsels and leads support groups for those who are grieving. She has lived with cystic fibrosis (CF) for 47 years and received a double lung transplant fifteen years ago. Isabel has been an active leader for various CF and organ transplant organizations for over two decades. Isabel and her late twin published the memoir, "The Power of Two: A Twin Triumph over Cystic Fibrosis," and served as international patient advocates in her mother's country, Japan, which led to the creation of a documentary film of the same title. Isabel has lectured around the country on topics such as living well with illness, end-of-life issues and organ donation, including a TEDx Stanford talk in 2014. She lives in Redwood City and is married to Andrew Byrnes. Connect with Isabel on Facebook, LinkedIn or on her website www.thepoweroftwomovie.com.