Cystic Fibrosis

Hi, my name is Rod.

It is great to have come across this group! If I may, please allow me to introduce myself.

I am fortunate to be the President and Founder of CF Vests Worldwide, in addition to being a CF patient who underwent a bilateral lung and liver transplant in August 2017. CF Vests Worldwide is a small non-profit that has donated over 380 cystic fibrosis vests to patients in more than 60 countries.

As we mark our 5th anniversary this year, we’re expanding to help U.S. CF patients too.

Our mission is to make these essential airway clearance vests accessible everywhere, including Cystic Fibrosis patients in the United States who are underinsured or who have no insurance. Our vest donations are primarily geared toward those who can’t afford them, as is the case with most CF patients globally.

Thanks for reading, folks, and take good care!

Rod
#MightyTogether

Hi, my name is FilotimoFoundaiton. I'm here because
we are a nonprofit organization dedicated to empowering and supporting individuals with cystic fibrosis (CF) and their families. Rooted in the Greek concept of filotimo—which embodies honor, selflessness, and a deep commitment to helping others—the foundation works to remove the stigma associated with CF while improving the lives of those affected by it.
What We Do:
Awareness & Advocacy – We educate the public about cystic fibrosis, ensuring that both children and adults with CF are seen, heard, and supported.
Financial Assistance – We help CF patients and families cover costs associated with treatment, medications, and other essential needs.
Community Support – Through events, fundraisers, and outreach programs, we create a strong, supportive network for those living with CF.
Research & Innovation – We contribute to advancing research, pushing for better treatments, and ultimately, working toward a cure.
At Filotimo Foundation, we believe no one should fight CF alone. Whether through financial aid, advocacy, or simply fostering a sense of belonging, we are committed to making a tangible difference in the CF community.

#MightyTogether

Going through a transplant can be extremely tiring, frustrating, and feeling like you’re in isolation. But you’re not alone! Here are 6 books that prove that:

1. “Faceless” by Alyssa Sheinmel
When Maisie Winters wakes up, she’s in the hospital. The last thing she remembers is running through the hills of her neighborhood one misty morning. Slowly, she puts the pieces together. Before she could make it home, a storm gathered. Lightning hit a power line and sparks rained down, the hot-burning electrical fire consuming her. Destroying her face. Where her nose, cheeks, and chin used to be, now there is…nothing. Maisie’s lucky enough to qualify for a rare medical treatment: a face transplant. At least, everyone says she’s lucky. But with someone else’s features staring back at her in the mirror, Maisie looks—and feels—like a stranger. The doctors promised that the transplant was her chance to live a normal life again, but nothing feels normal anymore. Before, she knew who she was—a regular girl who ran track and got good grades, who loved her boyfriend and her best friend. Now, she can’t even recognize herself. New York Times bestselling author Alyssa Sheinmel has created a gripping and gorgeously written tale of identity and love. This is a story of losing yourself and the long, hard fight to find your way back.

2. “Five Feet Apart” by Rachael Lippincott
In this moving story two teens fall in love with just one minor complication—they can’t get within five feet of each other without risking their lives. Can you love someone you can never touch? Stella Grant likes to be in control—even though her totally out of control lungs have sent her in and out of the hospital most of her life. At this point, what Stella needs to control most is keeping herself away from anyone or anything that might pass along an infection and jeopardize the possibility of a lung transplant. Six feet apart. No exceptions. The only thing Will Newman wants to be in control of is getting out of this hospital. He couldn’t care less about his treatments, or a fancy new clinical drug trial. Soon, he’ll turn eighteen and then he’ll be able to unplug all these machines and actually go see the world, not just its hospitals. Will’s exactly what Stella needs to stay away from. If he so much as breathes on Stella she could lose her spot on the transplant list. Either one of them could die. The only way to stay alive is to stay apart. But suddenly six feet doesn’t feel like safety. It feels like punishment. What if they could steal back just a little bit of the space their broken lungs have stolen from them? Would five feet apart really be so dangerous if it stops their hearts from breaking too?

3. “Things We Know By Heart” by Jessi Kirby
In this unforgettable novel, Quinn Sullivan falls for the recipient of her boyfriend’s donated heart. After Quinn’s boyfriend, Trent, dies in an accident their junior year, she reaches out to the recipients of his donated organs in hopes of picking up the fragments of her now-unrecognizable life. But whoever received Trent’s heart has chosen to remain silent. The essence of a person, Quinn has always believed, is in the heart. If she finds Trent’s, then in a way, she will still have a piece of him. Risking everything to get closure once and for all, Quinn goes outside the system to track down nineteen-year-old Colton Thomas, whose life has been forever changed by this priceless gift. But what starts as an accidental run-in quickly develops into something more, sparking an undeniable attraction. She doesn’t want to give in to it—especially since he has no idea how they’re connected—but the time Quinn spends with Colton makes her feel alive again. No matter how hard she’s falling for Colton, though, each beat of his heart reminds her of all she’s lost . . . and all that remains at stake.

4. “Heart To Heart” by Lurlene McDaniel
Elowyn Eden and Kassey Messechek are best friends. They share every aspect of their lives. But one thing Elowyn has not yet shared with Kassey is that she checked the organ donor box on her newly acquired driver's license. Kassey only learns of this in a startling and devastating way—when Elowyn's life-giving donor wishes are about to be honored. Arabeth St. Clair has not had the luck to have a best friend. Due to her diseased heart, she's led a sheltered life. When Arabeth is sixteen, she and her mother receive the call that will change their lives—but they don't know to whom they should be forever grateful. When the worlds of these three girls and their families intersect, lives are changed in ways never imagined. Most especially, it is Kassey who sees things differently, for she can keep alive the memory of her dear friend by sharing the renewed life of another teenage girl, while helping to ease the pain of the two families involved and coming to terms with her own.

5. “Saving Jessica” by Lurlene McDaniel
Jessica McMillian and Jeremy Travino are a perfect couple. But now Jessica has been diagnosed as having kidney failure. She is on dialysis three days a week and is so depressed that she's not sure she wants to live. Her one hope for a normal life is a kidney transplant, but she's an only child and her parents aren't suitable donors. Jeremy is determined to donate one of his kidneys to her, but his parents are terrified of losing their only child. Will Jeremy find the strength to go against his parent's wishes and do what he must to save Jessica?

6. “The Arrival of Someday” by Jen Malone
In this heartfelt and emotionally candid contemporary YA, author Jen Malone delves into the life of a teen whose world is brought to an abrupt halt when she learns she’s in dire need of an organ transplant. Hard-charging and irrepressible eighteen-year-old Amelia Linehan could see a roller derby opponent a mile away—and that’s while crouched down, bent over skates, and zooming around a track at the speed of light. They don’t call her Rolldemort for nothing! What she couldn’t see coming, however, was the unexpected flare-up of a rare liver disorder she was born with. But now it’s the only thing she—and everyone around her—can think about. With no guarantee of a viable organ transplant, everything Amelia’s been sure of—like her college plans, the mural she’d been commissioned to paint, or the possibility of one day falling in love—has become a huge question mark, threatening to drag her down into a sea of what-ifs she’s desperate to avoid. Then a friend from the past shows up. With Will, it’s easy to forget about what’s lurking underneath the lightness of their time together. It’s easy to feel alive when all signs point elsewhere. On the other hand, with the odds decidedly not in her favor, Amelia knows this feeling couldn’t last forever. But what can?

📚 Happy reading! ❤️

#themightyreaders #Transplant #CysticFibrosis #HeartTransplant #KidneyDisease

Having genetic disorders can be isolating. So here are 4 young adult books about genetic disorders to tell you that you’re not alone:

1. “A Step Toward Falling” by Cammie McGovern
*This book may trigger individuals who experienced sexual abuse, violence, or assault. Please do not read if this triggers you!

Cammie McGovern follows up her breakout young adult debut, “Say What You Will”, with this powerful and unforgettable novel about learning from your mistakes, and learning to forgive. Emily has always been the kind of girl who tries to do the right thing—until one night when she does the worst thing possible. She sees Belinda, a classmate with developmental disabilities, being attacked. Inexplicably, she does nothing at all. Belinda, however, manages to save herself. When their high school finds out what happened, Emily and Lucas, a football player who was also there that night, are required to perform community service at a center for disabled people. Soon, Lucas and Emily begin to feel like maybe they're starting to make a real difference. Like they would be able to do the right thing if they could do that night all over again. But can they do anything that will actually help the one person they hurt the most?

2. “Just Breathe” by Cammie McGovern
David Sheinman is the popular president of his senior class, battling cystic fibrosis. Jamie Turner is a quiet sophomore, struggling with depression. The pair soon realizes that they can be their true selves with each other, and their unlikely friendship develops into something so much more. But neither Jamie nor David can bring themselves to reveal the secrets that weigh most heavily on their hearts—and their time for honesty may be running out.

3. “Five Feet Apart” by Rachael Lippincott
In this moving story two teens fall in love with just one minor complication—they can’t get within five feet of each other without risking their lives. Can you love someone you can never touch? Stella Grant likes to be in control—even though her totally out of control lungs have sent her in and out of the hospital most of her life. At this point, what Stella needs to control most is keeping herself away from anyone or anything that might pass along an infection and jeopardize the possibility of a lung transplant. Six feet apart. No exceptions. The only thing Will Newman wants to be in control of is getting out of this hospital. He couldn’t care less about his treatments, or a fancy new clinical drug trial. Soon, he’ll turn eighteen and then he’ll be able to unplug all these machines and actually go see the world, not just its hospitals. Will’s exactly what Stella needs to stay away from. If he so much as breathes on Stella she could lose her spot on the transplant list. Either one of them could die. The only way to stay alive is to stay apart. But suddenly six feet doesn’t feel like safety. It feels like punishment. What if they could steal back just a little bit of the space their broken lungs have stolen from them? Would five feet apart really be so dangerous if it stops their hearts from breaking too?

4. “Rules for 50/50 Chances” by Kate McGovern
A heartrending but ultimately uplifting debut novel about learning to accept life's uncertainties; a perfect fit for the current trend in contemporary realistic novels that confront issues about life, death, and love. Seventeen-year-old Rose Levenson has a decision to make: Does she want to know how she's going to die? Because when Rose turns eighteen, she can take the test that tells her if she carries the genetic mutation for Huntington's disease, the degenerative condition that is slowly killing her mother. With a fifty-fifty shot at inheriting her family's genetic curse, Rose is skeptical about pursuing anything that presumes she'll live to be a healthy adult—including her dream career in ballet and the possibility of falling in love. But when she meets a boy from a similarly flawed genetic pool and gets an audition for a dance scholarship across the country, Rose begins to question her carefully laid rules.

📚 I hope this list can help someone 🧬

#themightyreaders #DownSyndrome #CysticFibrosis #HuntingtonsDisease #SickleCellDisease

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