Cystic Fibrosis

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Looking for Individuals with Picclines in NYC for Nova Campaign Shoot 🤍

Hi! My name is Emilie Delaye, and I’m one of the cofounders of Nova — a brand creating premium stylish piccline covers using unused luxury textiles.

This mission is deeply personal to me because I myself had both a piccline and a port, and I know firsthand how difficult it can be to feel confident and comfortable during a medical journey.

We’re currently casting individuals in New York City who currently have a piccline or have had one before for an upcoming campaign shoot taking place May 27–29.

Our mission is centered around confidence, representation, and creating medical wear that feels more personal and empowering.

No modeling experience is needed at all — we’re simply looking for real people and real stories.

If this sounds like someone in your community (or yourself), we’d love to connect. Please DM us or email emiliejd@udel.edu for more details 💌

Thank you so much for your support!

#PiccLine #medicaldevice #ChronicIllness #ChronicPain #Cancer #Diabetes #LymeDisease #CysticFibrosis

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What Is Cystic Fibrosis?

What Is Cystic Fibrosis?
Cystic Fibrosis is a genetic disease that causes thick, sticky mucus to clog organs like the lungs and pancreas. This can lead to breathing problems, infections, and digestive issues. Unfortunately, there's no cure for Cystic Fibrosis but management and treatments like medications, breathing treatments, a high-calorie diet with enzymes, and exercise can significantly improve the life expectancy of people who have Cystic Fibrosis.

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I'm new here!

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

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Finding Filotimo: How a Greek Virtue Became a Mission for Cystic Fibrosis Awareness

Growing up, I was surrounded by a word that didn’t have a direct English translation but shaped every aspect of my life—**filotimo**. A Greek term that embodies honor, selflessness, and an unwavering commitment to doing good for others, filotimo was more than just a word in my family; it was a way of life. Little did I know that years later, it would become the heart of my mission to support those living with cystic fibrosis (CF).

A Personal Journey Toward Purpose

My connection to CF is through a personal diagnosis and through the stories of countless individuals and families who battle this disease every day. CF is a genetic, life-shortening condition that primarily affects the lungs and digestive system, making even the simplest acts—like breathing—a daily challenge. Too many children and adults with CF face stigma, barriers to care, and an uncertain future.

Through my journey, I saw that despite incredible medical advancements, too many people are still being left behind. We can’t stand by and watch. That’s when Filotimo Foundation was born—a nonprofit dedicated to empowering and supporting the CF community, raising awareness, and advocating for better care and treatments for everyone affected.

We live in a world where invisible illnesses often go unnoticed, and people with CF sometimes feel like they are fighting an uphill battle alone. That’s why Filotimo Foundation isn’t just about funding research; it’s about building a community where no one faces CF alone.

Breaking Stigmas, Changing Lives

A major part of our mission is removing the stigma associated with cystic fibrosis. Many people don’t realize that CF affects adults as well as children or that the disease varies widely from person to person. By sharing real, personal stories, we hope to reshape the conversation and educate the world about what it truly means to live with CF.

Our foundation works tirelessly to provide financial assistance, emotional support, and advocacy for those who need it most. Whether it’s helping a family afford essential treatments, organizing awareness campaigns, or partnering with organizations to push for policy changes, every action we take is rooted in Filotimo—the deep, personal drive to do good for others.

We’ve come a long way, but the journey is far from over. Until every person with CF has access to the care they deserve, until no one loses their battle too soon, and until there is a cure, we will keep fighting.

If my story and the mission of the Filotimo Foundation resonate with you, I invite you to join us. Whether through donating, advocating, or simply learning more, you can be part of a movement that is changing lives.

Together, we can bring filotimo to the CF community and beyond—because no one should fight this battle alone.

www.filotimofoundation.org or Instagram Filotimo_Foundation

#filotimofoundation #Awareness #CysticFibrosis

Cystic Fibrosis Support | Filotimo Foundation

Cystic Fibrosis support for adults in need of financial or reproductive assistance: Welcome to the Filotimo Foundation.
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I'm new here!

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

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An In-Depth Look At What “Self-Love” Looks Like, How It’s Different Than “Self-Care”, And A Reminder That Self-Love Is At The Top Level Of Everything

There is More talk about Self-Care than the Most Critical Key to Happiness and Great Relationships of all types——-“SELF-LOVE”.

With this in-depth look at what Self-Love looks like-for your own personal growth, I would like you to take an honest look inwards and determine if you Practice Self-Love.
If you’re not, or if you’re not doing all of the bullet points given below, don’t worry— “Each morning, we are born again. What we do today is what matters most.”

As always, let’s have a great conversation about this topic below 👇 in the comments where you can use this space for your own place in your mental wellness journey. Not your mental illness journey— I am here as a friend to guide you through to the other side as much as possible—yes, that is where I stand, and the magic only happens if you let me—so how about more group members join in for your sake.

The Mighty friends that have opened themselves up to this opportunity are telling me and showing me that they are really starting to get it, and they are taking bigger, new, determined steps in their lives.

"Self-Love" refers to a deeper internal state of accepting and valuing yourself unconditionally, while "self-care" focuses on taking practical actions to maintain your physical and mental wellbeing, like getting enough sleep, eating healthy, and engaging in activities you enjoy; essentially, self-love is the mindset that drives you to practice self-care. Self-Love is the mindset too that heals the pain and keeps you in the light, Determined to keep pushing away any darkness and to stop doubting yourself.

Key points to remember:
* Self-love:
* A feeling of intrinsic worth and acceptance, regardless of circumstances
* Becoming your own best friend - treating yourself with the same respect and understanding you would give a close friend.
* Be the love you never received.
* Includes embracing your flaws
* Foundation for setting healthy boundaries and prioritizing your needs
* learn to say no when needed and clearly explain why
* Don’t seek Anyone’s validation
* Positive self-talk: Use encouraging language to speak to yourself, focusing on your strengths and accomplishments.
* Pay attention to your thoughts and feelings, recognizing negative self-talk and actively replacing it with positive affirmations/relabel upsetting thoughts
* Say something nice to yourself in the mirror — looking into your eyes & smile at yourself & say “I love you”and your name. (Yes, I actually stop myself to do this & it’s Wonderful)
* cultivate self-compassion
* Encourage Yourself
* Talk to someone you trust who *Has The Capacity To Listen*-and, Another Big Key Here is that ***Being vulnerable - completely honest and thorough- about what you’re going through with someone else is a major form of self-love because you’re taking the time to dig deep, regardless of how uncomfortable it is, And, on top of that, you’re showing yourself that you want to work out whatever’s going on with you***
* avoid comparing yourself to others
* practice gratitude
* Seek out opportunities for growth
* Creating a safe zone all your own is an act of self-love because it gives you a designated area where you can focus on your needs and emotions instead of other people’s. The key here is creating a space that feels good and peaceful when life is neither of those things.
#MentalHealth #Mindfulness #Selflove #Selfcare #Selfharm #SuicideAttemptSurvivors #SuicidalIdeation #SuicidalThoughts #Suicide #Trauma #MajorDepressiveDisorder #PersistentDepressiveDisorder #Depression #Anxiety #GeneralizedAnxietyDisorder #Agoraphobia #BingeEatingDisorder #EatingDisorders #EatingDisorder #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #LymeDisease #ComplexPosttraumaticStressDisorder #PostTraumaticStressDisorder #PTSDSupportAndRecovery #PTSD #BipolarDisorder #BipolarDepression #AutonomicDysfunction #AuditoryProcessingDisorder #Deafness #ADHDInGirls #ADHD #AspergersSyndrome #AutismSpectrumDisorder #Addiction #CerebralPalsy #IntellectualDisability #Disability #Blindness #BorderlinePersonalityDisorder #BorderlinePersonalityDisorderBPD #Fibromyalgia #ChronicPain #Migraine #IfYouFeelHopeless #BrainInjury #MotorDisorders #MultipleSclerosis #RheumatoidArthritis #Arthritis #Grief #Loneliness #AnorexiaNervosa #Relationships #SocialAnxiety #FamilyAndFriends #Caregiving #CrohnsDisease #CysticFibrosis #AlopeciaAreata #Cancers #EhlersDanlosSyndrome #ParkinsonsDisease #PosturalOrthostaticTachycardiaSyndrome #POTS #Stroke #Diabetes #SelfharmRecovery #RareDisease #DownSyndrome #AddisonsDisease #IrritableBowelSyndromeIBS #ObsessiveCompulsiveDisorder #ObsessiveCompulsiveandRelatedDisorders #ObsessiveCompulsivePersonalityDisorder #DissociativeIdentityDisorder

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A Mighty Together EASY Game That Needs All Of Us To Work 🤗 👋 🎤🎶🎧 #DistractMe #MightyTogether #MentalHealth #CheckInWithMe

Simply remember or find/Google/ask Alexa or Siri……a line or part of a line from a song or a song title that was written for Empowering all of us.

You are welcome to add in even just one. This is easy because it is not even your words that you are adding in or articulating. The words have been given to us.

For example: I often think of this part of line from a song: “I am going to dance on broken glass.”

And this part song title, part of a line of the lyrics:
“Better Days are coming, if no one told you.”

And this longer one section of another great song:
“DON'T YOU TELL ME WHAT YOU THINK THAT I COULD BE;
I'M THE ONE AT THE SAIL
I'M THE MASTER OF MY SEA.”

And this small section of a song that I hold close to my heart:
“Just remember who you are; how you were never one for folding; how you never liked the corner; how the dark don’t even know you.”

Let’s Go Big on this one.

Let’s make this a holiday gift you can give for free that could be exactly what Many others need Right Now.

This ties in with the image I chose for this because we are going to be taking inspiration from Christopher Reeve aka Superman in the 1978 film who famously said "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles".

So, I say YOU are a hero.

One of our Mighty family with a boatload of reasons to question this quote and anything, just a couple days ago, found, and in a way, smartly challenged my about 4 months old post with Christopher Reeve’s other famous quote “Once you choose hope, anything is possible.”

So, if you know anything about me, you know I accepted this challenge to help her and to help even more of us.

So I went to work for all of us— researching and drafting an impactful reply (and I can at times put hours into this work for all of us.)
Because YOU are worth fighting for.

So, I researched how he could say these profoundly optimistic and empowering statements when he, Christopher Reeve, a former role model to the world as Superman, was paralyzed from the neck down after a horse riding accident at age 42. His mother wanted doctors to remove his life support, because she thought that he wouldn’t want to live like this, but he fought back.

So the meaning to his quote about HOPE is: Hope, in this sense, is a decision. It is the most important decision we can make.

This choice of Hope also is not just wishful thinking, it has to be rooted in a Believing, it must be in the form of Optimism, and it must be held together by handing it over to a trust in ourselves, a trust in the universe having our back, to any form of spirituality that does not even need to be religion based faith.

Absolutely Right Now, All of Our Mighty Family Needs help with feeling Empowered to be Hopeful and Optimistic And YOU can be a hero and participate in this mission that is greater than all of us, greater than our own social anxieties, greater than our own fears and doubts, greater than our fatigue…

Whenever you see this post, especially through the rest of the entire holidays —All of them coming up for all denominations and through and past New Years…add in a line or part of a line from a song, or a song title, that was written for Empowering all of us. That was written to speak to all of us. To Connect All of Us.

GAME ON.

GAME FACE.

YOUR friend in this hard thing called life,
Dawn

#Depression #Anxiety #GeneralizedAnxietyDisorder #MajorDepressiveDisorder #PersistentDepressiveDisorder #MoodDisorders #Selfharm #Selfcare #Grief #ChildLoss #BipolarDisorder #Suicide #SuicidalThoughts #SuicidalIdeation #SuicideAttemptSurvivors #BorderlinePersonalityDisorder #ComplexPosttraumaticStressDisorder #ChronicPain #ComplexRegionalPainSyndrome #Fibromyalgia #MyalgicEncephalomyelitis #ChronicFatigue #ChronicFatigueSyndrome #PTSD #Trauma #PostTraumaticStressDisorder #AlopeciaAreata #AutoimmuneThyroidDisease #CrohnsDisease #AdrenalInsufficiency #AutonomicDysfunction #Cancers #LymeDisease #Migraine #ParkinsonsDisease #MultipleSclerosis #RareDisease #ADHD #BipolarDepression #AnorexiaNervosa #EatingDisorders #PosturalOrthostaticTachycardiaSyndrome #POTS #AutismSpectrumDisorder #AspergersSyndrome #Addiction #CerebralPalsy #RheumatoidArthritis #Arthritis #Disability #AddisonsDisease #ChronicIllness #CysticFibrosis #DownSyndrome #Epilepsy #MyCondition #musictherapy #Music #Songs #MightyMusic #IfYouFeelHopeless #WarmWishes #Agoraphobia #SocialAnxiety

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