LOOKING FOR GIFT IDEAS?
From books, to wine, to fine art and handcrafted goods, CFRI has compiled a list of gift ideas created by the CF community, for the CF community. Most of the items are available for purchase on AmazonSmile – remember that when you set CFRI as your charity of choice, a percentage of all your eligible AmazonSmile purchases go directly to CFRI.
The authors of the first four books on this list presented on their work at CFRI’s 2021 National CF Education Conference. To view a recording of their presentations, please check our 2021 Conference playlist on YouTube.
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BOOKS AND FILMS
“Salt In My Soul” by Diane Shader Smith
The diaries of a remarkable young woman who was determined to live a meaningful and happy life despite her struggle with cystic fibrosis and a rare superbug—from age fifteen to her death at the age of twenty-five.
For more than ten years, Mallory recorded her thoughts and observations about struggles and feelings too personal to share during her life, leaving instructions for her mother to publish her work posthumously. She hoped that her writing would offer insight to those living with, or loving someone with, chronic illness.
Diane also authored “Mallory’s 65 Roses,” the engaging story of Mallory, a creative and energetic little girl with cystic fibrosis.
“Exhale: Hope, Healing, and a Life in Transplant” by David Weill, MD
Exhale is the riveting memoir of Dr. David Weill, former director of the Stanford Lung Transplant Program. He vividly describes the emotional rollercoaster of saving and losing lives—until it was time to step back and reassess his own life.
The book is an inside look at the world of high-stakes medicine, complete with the decisions that are confronted, the mistakes that are made, and the story of a transplant doctor’s slow recognition that he needed to step away from the front lines. It is an exploration of holding on too tight, of losing one’s way, and of the power of another kind of decision—to leave behind everything for a fresh start.
“Little Matches: A Memoir of Grief and Light” by Maryanne O’Hara
When their only child was diagnosed with cystic fibrosis (CF) at the age of two, Maryanne O’Hara and her husband were told that Caitlin could live a long life or be dead in a matter of months. Thirty-one years later, Caitlin lost her battle with this devastating disease following an excruciating two-year wait on the transplant list and a last-minute race to locate a pair of healthy lungs.
Weaving together a series of interconnected meditations with illuminating glimpses of life rendered via text messages, e-mails, and journal entries, Little Matches is a profound reflection on life and death, motherhood, the pain of chronic uncertainty, and finding inspiration in the unexpected sparks that light our way through the darkness.
“Breath From Salt” by Bijal P. Trivedi
One of Bill Gates’ Top 5 Books of 2020, “Breath From Salt” details the medical fight against cystic fibrosis and how scientists were able to develop new technologies to help patients and their families.
A warm shout out to CFRI friend and partner in research, Paul Quinton, whose groundbreaking research plays a key role in the book.
“Terry’s Journey to CF Land” – A Children’s Story and Coloring Book by Terry Wright
“Terry’ Journey to CF Land,” written by Terry Wright of the National Association for African Americans with CF, inspires children with cystic fibrosis from all walks of life, as they read fascinating stories, and see many fun drawings to color.
Not only will this coloring book keep any child with cystic fibrosis happy, entertained, and encouraged, but will also help comfort and assure them that they are not alone in their CF journey.
“My Pants” by Nicole Kohr
“My Pants” is a story about Celana, a relatable and quirky little girl who is obsessed with pants and struggling with everyday social interactions. Her parents take her to multiple doctors who can’t seem to give a good explanation for her anxiety. “My Pants” is a story about inclusivity, advocating for yourself or others, and well, pants. It teaches neurodivergent children new coping mechanisms, and it gives readers the opportunity to review the coping mechanisms at the end of the book. It’s a must-have for every home and classroom.
“The Spider Who Never Gave Up” by Travis Flores
Written by three-time double lung transplant and CF survivor Travis Flores, this children’s story is about a spider named Sparkey, who could not spin a web. With some encouragement from his mom to keep trying, finally he spins a perfect web.
This book is just one of the many ways Travis inspires others with his message of encouragement to never give up on their dreams, no matter how bad things get.
“The Power of Two: A Twin Triumph Over Cystic Fibrosis, Updated and Expanded Ed.” – BOOK
For most people, a diagnosis of cystic fibrosis means the certainty of a life ended too soon. But for Isabel Stenzel Byrnes and Anabel Stenzel, twin girls with the disease, what began as a family’s stubborn determination grew into a miracle.
Originally published in 2007, this recently released Expanded Edition includes an updated account of Isa and Ana’s CF and transplant journey that you won’t want to miss.
“The Power of Two” – MOVIE (STREAMING)
A story of twin sisters, two cultures, and two new chances at life.Inspired by their 2007 memoir, “The Power Of Two” offers an intimate portrayal of the bond between half-Japanese twin sisters Anabel Stenzel and Isabel Stenzel Byrnes, their battle with the cystic fibrosis and miraculous survival through double lung transplants.
GOODS AND SERVICES
Art by Dominic Quagliozzi
Those who have attended CFRI’s A Breath of Fresh Air Gala in the last two years, may remember the auction contained some unique and striking pieces of art by artist Dominic Quagliozzi. Dominic, an adult with cystic fibrosis and recipient of a double lung transplant, lives and works in Los Angeles, CA. His work is primarily autobiographical and follows his health and medical experiences.
He uses his body heavily throughout his work, while stripping away privacy in attempts to bring out a more public dialogue about chronic illness and disability.
SaltyCysCreations CF-owned Craft Shop
Salty Cys Creations was created by Krystal Flores, and named in honor of her sister, Jessica Benson, who lives with CF and received a double lung transplant on 02-02-2020.
De Fina Family Cellars CF-owned Winery
De Fina Family Cellars is a small-production, boutique winery in Napa Valley. Our motto is “breathe.”, because just as a good wine needs to breathe, so do we.
When you buy wine from De Fina Family Cellars, a portion of that sale will be donated directly to charities benefitting Cystic Fibrosis patients.
Virdual Drum Lessons with Alex Jenkins
Alex has studied Music, Drums and Percussion at CSUS Sacramento, The Ali Akbar Khan School of Music in San Rafael and Drummers Collective in New York. He also spent three months in India studying North Indian Music.
In Addition, He performs and records regularly, around California and beyond, playing a variety of music (on both Drum set and Tabla) including, Jazz, Afro-Cuban, Rock, Blues, Fusion, Indian Classical and just about everything in between.
Alex leads his own group called “The Alex Jenkins Trio” which continues to keep a very busy performing and touring schedule, playing more than 100 shows a year.