Volume 2 CF Warrior Project Warriors
Warriors with CF featured in volume 2 of the book series.
Liam Wilson
Age: 6
"Never ever give up on anything."
Jessica Franklin
Age: 27
"If you focus that negative energy and do something positive for someone else, it will help minimize your pain and improve your mental outlook on life."
Nick Kelly
Age: 34
"I try not to use the word ‘goals’ or ‘objectives. Those are things you’re hoping happen. I’m not hoping it happens. I’m doing it."
Stacy Carmona
Age: 35
"I make the choice every day to fight."
Stephanie Stavros
Age: 38
"I was the first patient in Canada to be granted Compassionate Care for Trikafta. I felt like I won the life lottery. At that moment, I knew that this medicine was my only hope and my second chance at life. This was a gift to not only me but my son and my husband."
Dr. Miriam Frankenthal Figueira
Age: 34 – diagnosed at age 13
"My parents proactively connected with CF researchers around the world, and I learned from them that many scientists were working to find new treatments for CF. This made me hopeful and awakened in me an interest in meeting these scientists and becoming one of them."
Travis Suit
Age: 37 – diagnosed at age 37
"I’ve held my daughter’s frail eight-year-old body while she cried because her ‘lungs burned,’ and I marveled at the delight and wonder in her face as she surfed her first wave. Life experienced in contrasts like these has shown me just how deep my gratitude runs—gratitude for every breath, every sunset, every wave, and every beautiful human fighting to shine their light against CF odds."
Debra Mattson
Age: 50 – diagnosed at age 6
"I never take a moment for granted as I never expected to live this long."
Caroline Heffernan
Age: 51 – diagnosed at age 13
"I also believe that if I didn’t have CF, I wouldn’t be the strong, independent, determined (stubborn) woman that I am today."
Terry Wright
Age: 60 – diagnosed at age 54
"When I was finally diagnosed with CF, I thought to myself, Now I know why I was suffering all these many years with so much illness. Everything finally made sense and the dots finally connected."
Dr. Victor Roggli
Age: 71 – diagnosed at age 12
"When I was diagnosed at age twelve, the CF brochures said that most patients don’t make it past twenty-one. Then I got to twenty-one and was still doing okay. I went to medical school, where the textbooks said most patients don’t make it past thirty. I got to thirty and was still doing pretty good. I began to realize two things: one, nobody had a clue as to how long I might make it; and two, I was dragging the average age upward as I got older and older."
Martha Garvey
Age: 28
"Life can be incredibly hard, and it can feel like the world is against you, but I am convinced it can still be great. If my parents have taught me one thing, it’s to take your pain and make something good out of it. Find your reason and go."
Amanda Varnes
Age: 26
"In my mind, not succeeding just wasn’t an option. I set my eyes on what I wanted to accomplish outside of the hospital and kept that at the forefront of my mindset."
Nicole Kohr
Age: 29
"As I came to terms with these life-and-death circumstances, I harbored a wish that I could be involved with just one more show. Not just as an actor or choreographer, but as the creator."
Caleigh Sarah Haber-Takayama
Age: 31
"When I think about all I’ve gone through, my immediate thoughts are appreciation for the two selfless individuals who chose to be organ donors and save my life through giving me new lungs."
Erinn Hoyt
Age: 31
"I have been through so much in my life to make it to where I am today: healthy and alive! [My scars] are a sign of that. They represent strength, beauty, and a second chance at life. I want to continue to spread my message of scar positivity and beauty."
Dylan Mortimer
Age: 42
"I was always showing art in galleries and museums, but the work around health brought a more personal and emotional response: people crying, extreme joy, sending messages, etc. It became my way to transform a seemingly hopeless diagnosis into one of hope."
Alex Pangman
Age: 44
"Transplant has brought joy and happiness back into my life."
Bradley J. Dryburgh
Age: 25
"A person’s only real obligation in life is to find their purpose and relentlessly pursue it for the rest of their days."
Katie O’Grady
Age: 26
"When I get sick or find life is just not going my way, I try to remember that things will get better if you believe. Everyone is on their own journey through life, and the good and bad days you experience are just part of your story."
Lauren Luteran
Age: 22
"I feel like I can finally live a quality life. I have never seen a future so bright. I feel more hopeful than ever that there is a cure on the horizon."
Evan Scully
Age: 35
"In my youth, I ran to be the best. I took pride in beating people in sports who did not have CF. Now I run more to keep healthy, in body and mind, but also to keep a routine in my life."
Matt Barrett
Age: 35
"I thank my parents for instilling that routine in me of nebulizers and medications, as well as just being active my whole life."
Brianna Collichio
Age: 16
"Keep pushing through by faith, and keep breathing!"
Ethan Payne
Age: 18
"My physicians do believe that my singing has definitely improved my lung function."
Bradley Poole
Age: 34
"The best thing I can do is keep pushing through."
Amber Dawkins
Age: 37
"Knowing that other CF patients, and even parents of newly diagnosed babies, are finding hope in my story brings me to tears."
Rob Law
Age: 44
"My family was very supportive but did not allow us to use CF as a crutch."
Avery Flatford
Age: 18
"At the age of nine, I decided to be a pitcher and never stopped!"
Breana Schroeder
Age: 21
"I didn’t want my peers to show me any special treatment, which helped me not feel controlled by cystic fibrosis or have it make me believe I’m different from anyone else."
Shania Murphy
Age: 22
"[CF is] a hard life . . . especially when you’re younger and you want nothing else but to be like everyone else."
Chelsea Spruance Stahl
Age: 28
"I want to live to be old enough that my obituary says that I died with CF, not from CF."
Megan DiBenedetto
Age: 29
"So, vent, sulk, cry, do whatever you have to do. And when you’re done, look yourself in the mirror, wash your face, and push through, because tomorrow is a new day."
Ross Craig
Age: 38
"Exercise is my medicine. It has allowed me to pursue a lifestyle that hasn’t been dictated by my diagnosis."
Cassidy Evans
Age: 13
"Never stop believing in hope, because miracles happen every day."
Dr. Craig D. Reid
Age: 65
"I have learned to control CF and not have it control me and firmly believe that one is only limited by what they think they can’t do."
Marten DeVlieger
Age: 40
"When a man is faced with the need to survive, his natural instincts are to create an event to survive. The longing for freedom, family, and adventure comes from within."
Ella Balasa
Age: 29
"I believe having dreams and feeling fulfillment comes from motivation. Motivation to do and to be better for whatever parameters you set for yourself. My motivation for life comes in the most innate form, which is the will to live the fullest life I can in the time I am given to live it."
Dr. Jacob Witten
Age: 29
"I want to be the one to cure [CF]."
Anna Payne
Age: 34
"You never quite know when your time is up. I don’t have a lot of fear about things. When I’m given an opportunity, I don’t talk myself out of it. Life is short."
Stacey Bene
Age: 46
"I wanted to make that a reality for some of the most vulnerable among us. I feel like I was called to [do] this at this critical moment in time. I also feel honored to have been able to help so many in my community."
Chris MacLeod
Age: 52
"I’ve never doubted my ability to fight CF. Or anything, really."
Warriors without CF but who fight for those with the disease
Dr. Joshua Sonett
Connection to CF: Thoracic Surgeon
"To be able to help CF patients and [their] families, at a most difficult time—facing a lung transplant—is so important. But in return to the hope and help we offer as doctors, the friendship, love, and inspiration that, in particular, CF patients return to us is immeasurable."
Drs. Batsheva Kerem & Eitan Kerem
Connection to CF: Dr. Batsheva Kerem (Geneticist) & Dr. Eitan Kerem (Professor & Physician)
"We learn from each other, we develop ideas for research together, and we consult with each other when we face challenges. (quote from Eitan Kerem)"
Dr. Francis S. Collins
Connection to CF: Former director of the NIH and one of two geneticists responsible for the discovery of the CF gene
"It was a long hard journey to get here, but when I read stories about people whose lives have been utterly transformed, I can’t help but get emotional."
Dr. Lap-Chee Tsui
Connection to CF: One of two geneticists responsible for the discovery of the CF gene
"I could only encourage the patients by saying that our finding had made discoveries of rational treatments possible for the first time. Now, thirty years on, I am extremely happy that so many lives have been saved with our initial discovery."
Dr. Bonnie Ramsey
(on left)
Connection to CF: Physician
"There have been many patients telling me the incredible impact."
Dr. Bob Beall
Connection to CF: Scientist and former president and CEO of the Cystic Fibrosis Foundation
"I can visualize the lives of so many young people with CF who are finally living the dreams we have for all of our children."
Doris Tulcin
(on right)
Connection to CF: Mother to a CF warrior and former president and cofounder of the Cystic Fibrosis Foundation
"My life has been extremely meaningful and positive as a result of CF entering my life, as I have met so many wonderful people along the way."
Jaime Parsons
(on left)
Connection to CF: Mom to a CF Warrior
"[My daughter and I] always had adventures. Making lifelong memories, memories that will live on forever. So I would like to someday be able to give that gift to other CF families. Memories that will forever be locked into time to hold on to."
Melissa Yeager
(on left)
Connection to CF: Mom to a CF Warrior
"Raising a child with an illness like CF is not easy. However, hearing the diagnosis and those first few days of reading about what the disease was, what it meant to live with it, life expectancy, pain and suffering, etc. left out all of the beautiful gifts that it brought to me and to my family."
Margarete Cassalina
Connection to CF: Mom to a CF Warrior
"I will not stop until all one hundred percent of those with cystic fibrosis have a cure. And I won’t stop. Knowing how hard my children fought to live a happy and healthy life, that was all the influence I needed to do all I could with what I had to make their lives, and all those with cystic fibrosis, better."
Beth Vanstone
Connection to CF: Mom to a CF Warrior
"It’s a very delicate balancing act, never wanting Madi to be defined by her disease, but I also didn’t want her to be ashamed of it. As a family we chose to fight this disease with all we had."
Laura Bonnell
(second from left)
Connection to CF: Mom to two CF Warriors
"I was starting to heal from the diagnosis that blew up my idyllic dreams of motherhood. Then I realized—this was my journey, my purpose in life. And then I couldn’t be stopped as I decided to one day start my own foundation, raising awareness and funds."
Diane Shader Smith
(in the back)
Connection to CF: Mom to a CF Warrior
"I adopted a mantra—‘No Pity Party’—and taught Mallory from a young age to prioritize love and friendship . . . to enjoy the small things, both of which she did."
Melissa Kandel
(on right)
Connection to CF: Daughter to a CF Warrior
"Cystic fibrosis was very much a main character in the narrative of my early years. From as far back as I can remember, a nebulizer followed our family on vacations, the hours between dinner and bedtime were for my mom to inhale her medicine while I sat with her and my dog, watching TV as she puffed on her medications, and I eventually fell asleep."
Kate O’Donnell
(second from left)
Connection to CF: Sibling to a CF Warrior
"I’m obviously really lucky that I actually enjoy what I’m doing, no matter what it is, but the opportunity to work with the CF community is honestly such a blessing. The group is so motivated, and fun, and successful. The people I have met through this work are some of my absolute favorite humans and have taught me so much about this world and how to make a difference effectively."
Kristen Brockman Knauf
Connection to CF: Sibling to a CF Warrior
"When I was in junior high, my cheerleading squad competed in a cheer competition that was held in honor of a high school cheerleader who had passed away from CF. They let Kelsi come out onto the floor and do a little cheer pose, and I think at that moment the reality of CF started to set in with me."
Megan Barker
Connection to CF: Spouse to a CF Warrior
"It was during this worst of circumstances that I realized there were no resources for people like me who marry into the CF community, and after that episode, I wanted to ensure that no one had to use Google as their only guide for navigating life as a CF spouse/partner."
Colton Underwood
Connection to CF: Cousin to a CF warrior and founder of the Colton Underwood Legacy Foundation
"I wanted to be able to impact the quality of individual lives as they pursue their dreams, knowing that they have longer to live than ever before."
Justin Baldoni
Connection to CF: Friend to a CF warrior and director of Five Feet Apart
"I thought how interesting that the very person that should be able to understand you more than anybody is the one person you have to stay away from. That gave me the idea for Five Feet Apart and Claire was the inspiration."
Larry Wayne “Chipper” Jones Jr.
Connection to CF: Loyal supporter of the Cystic Fibrosis Foundation
"They are fighting such a terrible and unimaginable disease, and through it all, they remain vibrant, loving life to the fullest. We can all learn something dear from them: never, ever take life for granted."
Lewis Black
Connection to CF: Loyal supporter of the Cystic Fibrosis Foundation
"I believe that it is important to find a cure for a disease in my lifetime, the way in which I saw polio cured. It would mean a great deal to all of us. And no one should have to suffer at the hands of this disease."
Eva Lipman
Age: 74
"It goes to show that taking a chance can bring unexpected rewards, and you never know how kind human beings can be."
Michael Caruso Davis
Age : 19
"Whatever is thrown my way, I put my head down and go straight through it."