As a member of the Communications team at the CF Foundation, I am privileged to hear incredible stories of people across the CF community who fight for a cure, any way they can. Any efforts to tell more people about cystic fibrosis and its impact are especially important. More awareness means more support for the research and development being done in this field.
Periodically, we'll be highlighting some of your work here on the blog to help spread the word about all that you do to support the CF community.
If you have a CF-related project you'd like us to include in a future roundup, shoot us an email at blog@cff.org.
Donna Codell
Author, There Are No Alligators in Heaven
My daughter, Jennifer, passed away on Dec. 5, 2015, one month before her 44th birthday -- waiting for a double lung transplant that she never received. She lived in Florida with her husband for her last 5 years. When she passed, I knew that I wanted to write a book about her and share with the world the amazing example she set for how to live life fully in spite of the unrelenting savagery of CF. She always had a smile on her face no matter how she felt. She was such a positive, courageous, selfless, loving, happy child and woman who was taken too soon.
My husband and I wanted to write this book, There Are No Alligators in Heaven, and add Jennifer's writings from the CF Roundtable to inspire others who are struggling with CF, or any health issue, to never give up. She was such a help to my husband when he was diagnosed with stage IV lung cancer in 2012. Unfortunately, he passed away in December 2016, so he never saw the published book.
There Are No Alligators in Heaven is available for purchase on Amazon.
Nicholas Ferracamo
Filmmaker, The Gift of 65 Roses
The Gift of 65 Roses follows the story of Rich, a man in his early 30s who made all the “right” choices in life but can't find contentment. Rich's brother Joe, who has cystic fibrosis, chose following his passions over making all the right choices, but he, too, questions whether that is the right way to live. As they deal with family, friends, relationships, and the physical and emotional ailments that go along with CF, life's purpose starts to become less and less clear for both brothers -- until Joe is ultimately faced with a life-and-death decision.
The film is about finding the truth within yourself and finding a life that you want to live. In the end, there is no right or wrong. There's no playbook for this life.
The Gift of 65 Roses is in the beginning stages of production, but you can watch the trailer. If you would like to get involved, feel free to contact Nick through Facebook (and be sure to like the page).
Ray Poole
Author, Lessons from a CF Cornerman: 38 Lessons I Learned from My Wife’s Illness and Lung Transplant
With overwhelmingly positive reviews, Lessons from a CF Cornerman tells an inspiring story from a husband's perspective. On New Year's Eve 2014, 37 years into her struggle with cystic fibrosis, Rebecca Poole went into respiratory failure and was placed on life support in a medically induced coma. The doctors gave her days to live, but she would take much more than that.
The struggle to stay positive and move forward in the face of impossible odds comes across in this incredibly honest portrayal of the ups and downs of a major illness. My lessons relate to relationship conflicts, personal motivation, and overwhelming obstacles. The serious subject matter is offset by my humor and wit, as this self-proclaimed expert on "holding her pocketbook like a man" takes you through an incredibly tough experience and what I learned from it.
The book was written to help people living with health issues and their family members navigate the ever-changing challenges of a progressive disease, while telling an inspiring story and making a case for realistic optimism.
Lessons from a CF Cornerman is available for purchase on Amazon.
Beth Vrabel
Author, Caleb and Kit
Caleb and Kit is a book about what happens when friends realize they have to grow apart, just as two trees sometimes have to bend away to share sunlight. The main character, Caleb, happens to have cystic fibrosis. Why? Because 30,000 Americans do. The book is not about CF, but the disease affects Caleb's relationships and experiences.
As the mother of a child living with a different disability, I knew how damaging a false portrayal of this story would be. So, I researched. And researched. I learned a lot of facts, but I still didn't know Caleb.
I reached out to the CF community and was blessed to hear back from several people willing to share insight into their rich, vibrant lives, of which CF is just a part, not the centerpiece. These friends include Will, an award-winning filmmaker; Jack, a young soccer player and brother; and Joey, a pint-sized fighter taking on the second grade. Suddenly, Caleb was real to me, and I didn't want him to be facing these treatments, this prognosis, or the pain of cystic fibrosis any more than I wanted it for my new friends. And that's when it became all the more important to include CF truthfully and authentically in the book.
My prayer now is that Caleb and Kit will be moved to the historical fiction section of the library because a cure has been discovered. Until then, I remind myself what I tell my children: everybody has a story. Everyone faces challenges. But your story is so much greater than your challenge.
Caleb and Kit is available for purchase on Amazon.
