Emily's Entourage

05/31/2026

May comes to a close today—but the truths shared this month and the urgency of our work don’t end here.

This month, we opened the door and let the world see what so often stays hidden about life with .

The realities that rarely make headlines but shape every moment of every single day.

You showed up with honesty.
With vulnerability.
With courage.
And most of all, with care.

And in doing so, you reminded us why this work matters so deeply.

Because behind every story shared this month is the same truth:
Too many in the community are still waiting.

Waiting for breakthroughs.
Waiting for deep breaths.
Waiting for futures unconstrained by CF.

So while Month may be ending, our resolve here at Emily’s Entourage is stronger than ever.

We’ll keep pushing.
Keep accelerating.
Keep racing until we —for every single person living with this disease and everyone who loves them. 100%, full stop! ❌💜

Thank you with all of our hearts for joining us and being such an important part of this most critical quest!

05/30/2026

This month, the community helped us lift the curtain and show the world what often goes unseen about life with .

The weight. The promise. The urgency. The hope.

And while may be ending, our work is far from over.

At Emily's Entourage, we’re fueling the research needed to finally —once and for all.

Hear directly from some of the researchers driving this work forward as they share why they believe breakthroughs for the final 10% are closer than ever—and why we refuse to stop until no one is left behind. ❌💜

🎥 Watch now:

Behind every breakthrough in is a relentless commun...

05/29/2026

🔎 : Advanced lung disease remains a reality for many people living with .

In 2024, more than 97.3% of individuals with advanced lung disease were adults, with a median age of just 36.8 years.

Despite recent advancements, many people living with still face severe disease, declining lung function, resistant infections, and complex comorbidities—especially those in the final 10% unable to benefit from current mutation-targeted therapies.

Progress has changed what’s possible. But for many in the CF community, progress is still beyond reach and time is running out.

💜 Share this to help accelerate awareness and for everyone.

05/29/2026

knows no boundaries—but neither does our drive to accelerate lifesaving breakthroughs and a cure for every person living with .

We're deeply grateful to AbbVie, Sionna Therapeutics, Arcturus Therapeutics, and Nestlé Health Science, our 2026 Tier 3 CF Awareness Month Sponsors, for helping us and reach our goal of 100% or bust ASAP.

Together, we’re paving the way toward a future where everyone with CF can breathe deep and free.

Thank you from the very bottom of our hearts. 💜

05/28/2026

For some, is shaped as much by where you live as the disease itself.

This week’s story features Zahraa Ammar, a hospital pharmacist in Iraq and aunt to a young boy with CF, who shares what it means to navigate this disease in a place where even the most basic treatments are often out of reach.

From years of misdiagnoses and traveling across provinces for testing, to smuggling enzymes from other countries and navigating life with rare mutations and no access to modulators, Zahraa’s story reveals the devastating realities many families face simply because of where they live.

💬 “My nephew is a hero—but he shouldn’t have to be.”

Because the mission to includes everyone, full stop. Where you live should never determine whether you get the chance to breathe.

🔗 Read the story: https://www.emilysentourage.org/my-nephew-has-cf-in-iraq-heres-what-people-dont-see/

Thank you to our 2026 Tier 1 sponsor for supporting our series!

05/28/2026

A few weekends ago, an incredible community came together for the 2026 Michael Borgioni Walk—a meaningful 3-mile walk celebrating Michael’s life, honoring his remarkable legacy, and fueling hope for the future. 💜

Because of the extraordinary generosity and passion of everyone involved, the event raised an astonishing $21,700+ in support of lifesaving research for the final 10% of people with who do not benefit from current mutation-targeted therapies.

We are truly in awe of this tremendous outpouring of love and commitment to creating a future where NO ONE with is left behind.

To everyone who walked, donated, volunteered, sponsored, and helped bring this special event to life—THANK YOU for carrying Michael’s legacy forward in such a powerful and meaningful way. ✨

💌 Interested in hosting your own community event to support breakthroughs for the final 10%? We’d love to hear from you.

🔗 Get in touch >>> https://www.emilysentourage.org/contact-us/

05/27/2026

He once wanted to study dolphins.🐬 Now he’s helping reimagine what’s possible for people with . 🫁💡

This week’s spotlight features Colin Hemez, PhD, who is working to develop gene editing approaches to tackle .

With Emily’s Entourage’s support, his research is expanding what’s possible—developing strategies to address dozens of CF-causing mutations that don’t respond to current therapies.

Because breakthroughs don’t come from thinking small.

And with bold science like this, we’re moving closer to a future where we can —for everyone. ❌💜

🎥 Watch to learn more: https://youtu.be/8rkW3PYvMbU

Thank you to our 2026 Tier 2 sponsors—Baxter International Inc., Viatris Inc., Boehringer Ingelheim, Enterprise Therapeutics Ltd, and 4D Molecular Therapeutics—for supporting our series!

05/26/2026

Let’s with the unwritten rules of :

✈️ Bring your meds in your carry-on on the flight, always.
🧻 Tissues, toilet paper, and lip balm from home are must-haves in the hospital.
🧴 Purrell for life.
🗑️ No better hand-eye coordination practice than tossing med ampules into the trash.
👵🏻 Bring on the gray hair!! Aging is a gift.

💬 What’s an unwritten rule you'd add? Share with us below ⤵️

05/26/2026

Join Emily’s Entourage for a free, informational webinar on the mRNA approach and LunairCF clinical trial from Arcturus Therapeutics.

The Arcturus team will share an overview of the mRNA approach to therapy, including the currently enrolling LunairCF study of an investigational mRNA therapy for the treatment of CF lung disease. They’ll also answer live and pre-submitted questions from the audience, and EE will share about our CF Clinical Trial Connect database and clinical trial matchmaking program.

🗓 Monday, June 8
🕖 7:00–8:00 PM ET

The event is free, but registration is required in advance. Individuals with CF, family members, caregivers, healthcare providers, researchers, and other members of the CF community are all welcome to attend.

👉 REGISTER >> https://us02web.zoom.us/webinar/register/WN_nAz6bFJSS0mI_NjCdJSKnQ #/registration

05/25/2026

Behind every person living with is a circle of quiet, but powerful strength.

The parents who become CF experts.

The siblings who grow up faster than they should and get used to always accommodating CF.

The partners and friends who carry both hope and fear.
The loved ones who stand beside every triumph and setback.

They may not have —
but they live it, too.

This is .
The unseen worry.
The shared resilience.
The love that shows up, day after day.

It’s the love and perseverance of that community that fuels the relentless push to .

💬 Tag someone who stands beside you in your CF journey 💜