SPEAKERS

Jackie Bessette
Jackie Bessette
CF Spouse / MiniCon Co-Chair
How to Become Mentally Prepared for the Transplant Journey

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).



Elisabeth Dellon
Elisabeth Dellon
CF Clinician
Not Pursuing a Transplant

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 Eisenmann
Jen Eisenmann
Person with CF
Real Talk: My Transplant Experience

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.





Tommye Lambert
Tommye Lambert
CF Parent
Not Pursuing a Transplant

Dr. Tommye Lambert is from Hoover, Alabama. She is the mother and life-long caregiver to her daughter, Amy Crews, who was the recipient of two bilateral lung transplants. Amy’s first transplant was very successful, allowing her to attend and graduate from college, become a neonatal intensive care nurse, work for several years at Children’s Hospital of Alabama, serve as an advocate for CF and organ donation, travel on mission trips, and enjoy her many hobbies. Amy’s second transplant came nine years later following injury to her transplanted lungs related to a severe bout with pneumococcal pneumonia. The second transplant was also successful, but Amy passed away a little less than two years after the second transplant when she developed a rare and severe reaction to a class of antibiotics that was being used to treat an infection.
 
Tommye is active as a patient/public voice in the national healthcare community. She serves in this capacity on the Governance Council of the American Board of Internal Medicine (ABIM) and on the Palliative Care Guidelines Committee for the National Cystic Fibrosis Foundation. She advocates for organ donation and has been a fundraiser in the Alabama Cystic Fibrosis Community for more than 30 years. She works as a speaker, writer, and minister and as adjunct professor in the religion department at Judson College in Marion, Alabama. After Amy died, Tommye launched a ministry and blog, Live and Proclaim to encourage those walking through difficult circumstances. She can be reached at liveandproclaim@gmail.com.


Danielle Mandella
Danielle Mandella
Person with CF
Not Pursuing a Transplant
Real Talk: My Transplant Experience

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.



Joseph Pilewski
Joseph Pilewski
CF Clinician
Transplant 101

Dr. Pilewski has a longstanding interest in Cystic Fibrosis and other diseases causing bronchiectasis and bronchiolitis. He is Co-director of the Adult Cystic Fibrosis program at the Antonio J. and Janet Palumbo CF Center at Children’s Hospital of Pittsburgh of UPMC, and the University of Pittsburgh Medical Center. Dr. Pilewski’s other focus is lung transplantation, with special interest in patients with suppurative lung diseases like CF.


Kasey Raffensperger
Kasey Raffensperger
The Evaluation Process

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.



Jack Raffensperger
Jack Raffensperger
CF Spouse
The Evaluation Process

Jack Raffensperger’s connection to CF came early in college when he met the love of his life. Before meeting his now-wife, Kasey, he knew very little about cystic fibrosis. He quickly learned that it is a disease that has the ability to change not only the life of the person who has it, but also the life of the people who love them. He has been by her side through countless doctor appointments and surgeries. Even though CF doesn’t define Jack and Kasey as a couple, it is something that is and will always be there. Jack was born and raised in Maryland and currently lives outside the New York City area. He works in the finance industry, and he and Kasey have a 4-year-old puppy named Reilly.


Samantha Rick
Samantha Rick
Person with CF
Research Impacting Lung Transplant Rejection

Diagnosed at 3 years old, Samantha has been living with CF since 1980. Originally from Wisconsin, she has been living in California since 2003. Samantha earned her B.S. in Social Science and Health, minoring in Sociology. She currently works as a Case Manager for the Alternative Sentencing Program under the Plumas County District Attorney’s Office aiding adults in the criminal justice system.
 
A firm believer in exercise, Samantha kept her lungs healthy through her late 20’s but at the age of 31 she had to undergo a double lung transplant. After 5 years of living oxygen and hospitalization free, she developed CLAD and experienced chronic rejection in the spring of 2016 and had to be hospitalized until new lungs came. On October 11, 2016 she received the gift of life once again and has been doing well since.
 
Samantha spends her free time rock climbing, mountain biking, traveling and volunteering with her local CF chapter. She is also a member of Community Voice and is a mentor for the Lung Transplant Foundation as well as for CF Peer Connect.


Patrick J. Smith, PhD, MPH
Patrick J. Smith, PhD, MPH
CF Clinician
How to Become Mentally Prepared for the Transplant Journey

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.



Rodrick Spadinger
Rodrick Spadinger
Person with CF
Real Talk: My Transplant Experience

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.



Lisa Stackhouse
Lisa Stackhouse
Person with CF
How to Become Mentally Prepared for the Transplant Journey

Lisa was diagnosed with cystic fibrosis at 13 years old. She had a double lung transplant in October 2015 at the University of MN. She earned her bachelor’s degree in Education to be a teacher at Winona State University in MN. However, Lisa worked in the IT field as a server engineer for 22 yrs. Lisa is married and has two very adored toy poodles. Lisa volunteers at CFF, CF Foundation Minnesota Chapter, LifeSource of MN and at her church.


Joe Stackhouse
Joe Stackhouse
CF Spouse
How to Become Mentally Prepared for the Transplant Journey

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 Stenzel Byrnes
Isabel Stenzel Byrnes
Adult with CF
Not Pursuing a Transplant

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.



Fanny Vlahos
Fanny Vlahos
Person with CF
Transplant 101

Fanny Vlahos is a CF patient who underwent a double lung transplant in May of 2012. She holds degrees in English Language and Literature with honors and both Canadian and American law degrees. She is a licensed attorney in Illinois and also holds a real estate license.
 
Fanny is committed to advocating on behalf of the CF community through her volunteer work with the CF Foundation. She is a member of the steering committee at the national level to establish policy guidelines for lung transplant centers, a member of the IL chapter's advocacy committee, a blogger and advocate for health care reform both nationally and locally. She also shares her story via her blog, serves on the Policy Committee and Curriculum Council of her local school board and is an active volunteer at her son's school. Lastly, she is a volunteer basketball coach along with her husband.  
 
Born in Canada to Greek immigrant parents, Fanny now lives in the Chicago area with her husband of ten years, their rescue dog and their son, who is, quite literally, her reason to keep breathing and living life passionately. Follow Fanny on Facebook and on Twitter.


Sam Weigt
Sam Weigt
CF Clinician
Research Impacting Lung Transplant Rejection

Dr. Sam Weigt is an Assistant Professor in the Division of Pulmonary and Critical Care Medicine. He is also the director of the Interstitial Lung Disease Center and Pulmonary Fibrosis Foundation Care Center at UCLA.
 
He is a graduate of Creighton University School of Medicine, where he earned his M.D. degree. He then did his residency training in Internal Medicine and fellowship in Pulmonary and Critical Care at UCLA. He earned his Master of Science in clinical research through the Specialty Training and Advanced Research (STAR) Program at the David Geffen School of Medicine at UCLA.
 
Dr. Weigt joined the faculty at UCLA in 2008. Dr. Weigt is an attending physician in the Interstitial Lung Disease Center, the Lung Transplant Program, and on the Advanced Lung Disease inpatient consult service at UCLA. Dr.Weigt is also an active researcher who studies interstitial lung disease and lung transplant rejection.