Seeing Forward: Imagining a Future Without Limits for Emily and the Final 10%
Every birthday candle Emily lights has always meant more than another year older.
It has meant another year here. Another year of navigating a disease that never rests. Another year of choosing hope, discipline, and grit—sometimes quietly, sometimes defiantly—just to keep going.
For roughly 90% of people with cystic fibrosis (CF) who now benefit from mutation-targeted therapies, the future has opened up. They’re going back to grad school, launching careers, starting families, diving into hobbies, and traveling the world.
But for Emily—and everyone else in the final 10% unable to benefit from these breakthroughs—time is still narrowing.
That’s what Emily’s Entourage (EE) exists to change, to speed lifesaving advances for everyone with CF so every single person with CF can live the long, healthy, boundless future they deserve, unconstrained by this horror of a disease.
This year, as Emily turns 41, we’re pausing not only to celebrate what she’s overcome, but to ask a different question altogether:
What comes next if we dare to see forward—beyond CF?
So this birthday, we asked some of the people who know Emily best to go there and dare to see forward with us.
What follows is a collection of those visions—intimate, honest, and filled with longing. Not as fantasy, but as a reminder of what’s at stake and why we race like crazy every single day and for every single person in the final 10%—for that single perfect day free from CF
Jessica Rutstein Lazarus, PsyD
Emily’s Entourage Board Member & Emily’s Lifelong Best Friend
Q: Close your eyes and imagine Emily living completely free from CF—what does a single perfect day spent together look like?
A: I have been so fortunate to share many life milestones, special moments, and fun adventures with Emily. We’ve had so many days together that truly felt close to perfect—even if we were just grabbing dinner and then ended up talking for hours.
But to be truly perfect, I wish that she did not have to manage the additional responsibility of living with CF—vigilance for extra health risks around us, keeping an eye on timing to factor in her nighttime treatments, and all the invisible calculations that shape every decision.
A perfect day would feel light. Unburdened. Not defined by what comes next on the treatment schedule—but by the moment we’re in.
Q: What is a moment you long to see her experience—something she’s always dreamed of, but couldn’t do because of CF?
A: I long for Emily to be afforded the ease of spontaneity—to be swept up in the moment and go with whatever her heart desires.
I would love for her to be able to just pick up and go—to drive or fly off to a new destination without the heavy mental load of her treatment needs. To change plans. Extend plans. Say yes without first asking herself what it will cost her body later.
Coby Golinkoff
Emily’s Entourage Co-Founder and Emily’s Brother
Q: Close your eyes and imagine Emily living completely free from CF—what does a single perfect day spent together look like?
A: We’d be in a beautiful coastal town—somewhere calm and charming, slightly off the beaten track and “upscale granola,” as Ea (my nickname for Emily) would say.
We’d start the day grabbing lattes at a tucked-away café “where the locals go.” We’d wander through town, then head out for a hike filled with fresh, salty air and wide-open views. We’d discover a beautiful overlook, appreciate the view, and let the ocean air fill our lungs.
The day would be full of deep and unhurried conversations—about life, family dynamics, personality types, the latest podcast that sparked a new idea, or some productivity hack we’re debating. Big things. Tiny details.
We’d end the day with family games, deep belly laughs, and a delicious meal—ideally lobster or crab if it’s a local specialty.
Above all, the day would be defined by freedom. Unencumbered by breathing equipment, rigid treatment schedules, cough spells, or constant monitoring of carbs and blood sugar.
Just presence. Connection. Joy.
Q: What is a moment you long to see her experience?
A: I’d love for Ea to be able to jet-set freely—exploring all the beautiful corners of the world she’s always dreamed of seeing, with the people she loves most.
Marissa Nadel
Emily’s College Best Friend
Q: Close your eyes and imagine Emily living completely free from CF—what does a single perfect day spent together look like?
A: I would love nothing more than to have Emily come visit me in Los Angeles again—without limits, without hesitation, without worry.
We’d head to the Malibu Country Mart, picking up sandwiches and, of course, black-and-white cookies, before spreading out a blanket for a picnic by the beach. Emily would kick off her shoes and run straight into the sand, chasing my boys, laughing as we build sandcastles together.
There would be no pacing herself. Just presence.
We’d end the day with ice cream in hand, watching the sun dip below the Pacific, soaking in the kind of moment that feels simple on the surface—but means everything when nothing is holding you back.
Q: What is a moment you long to see her experience?
A: Emily has always loved Europe, and I dream of seeing her wander freely through the South of France or the small, charming towns along the Amalfi Coast—soaking in the beauty, the food, the culture, and the magic of exploring the world without limits.
I want her to enjoy every corner of it—unrushed, unburdened, and fully present.
I truly pray that this future becomes real—that the breakthroughs she’s been waiting for arrive in time, and that this life she’s imagined for so long is finally hers to live.
Julia Kramer-Golinkoff
Emily’s Entourage Co-Founder and Emily’s Sister
Q: Close your eyes and imagine Emily living completely free from CF—what does a single perfect day spent together look like?
A: When I picture a perfect day with Emily, it isn’t something big or extravagant. We’d start with coffee in the morning. No rushing. No underlying worry. Maybe we’d go for a walk later in the day—or even a scenic hike—without stopping to calculate what her body can handle or what equipment she needs to bring along.
Mostly, we’d just be together. No coughing spells cutting moments short. No blood sugar scares that instantly shift the energy of the day. No oxygen tanks or medical interruptions pulling us back into reality.
Just time. Just ease. Just my sister—fully present, without her health standing in the way of the moment.
Q: What is a moment you long to see her experience?
A: Emily loves travel. She loves adventure and novelty. She’s always been drawn to new places, new ideas, and the feeling of discovery.
Over the years, I’ve watched CF slowly take that freedom away from her—quietly, incrementally, and painfully.
Plans that once felt possible started to feel complicated. Then risky. Then unreachable.
What I long for most is the day she gets that freedom back. To say yes to adventure without fear.
Michelle Eber
Emily’s College Best Friend
Q: Close your eyes and imagine Emily living completely free from CF—what does a single perfect day spent together look like?
A: In my mind, Emily is back with all of us—together in person, reunited with all of our best friends from Penn; the way we were always meant to be.
We’d start the day hiking to a beautiful vista with no consideration of altitude or oxygen level. No second-guessing whether it’s “safe enough.” We just go.
Afterward, we’d spend the afternoon hanging by the pool, stretched out in the sun, catching up on life the way only longtime friends can. Emily would have endless energy. The day would feel light, filled with joy and endless, hysterical laughter.
Q: What is a moment you long to see her experience?
A: More than anything, I want Emily to be able to live each day as fully as she would otherwise—without constantly managing her energy, planning around treatments, or bracing for health setbacks.
We desperately want her back on our college girls’ reunion trips. I want to see her act on her wanderlust without restriction—taking new adventures to far away places.
And I long for a future where she moves through everyday life without the fear that a sudden lung bleed or infection could thwart everything. Where her days are defined by possibility, not precaution—and where her only question is, What do I want to do next?
Why We’re Seeing Forward—Together
These imagined days aren’t indulgent dreams—they are north stars for EE.
They reflect what the final 10% have been denied and what we are ferociously working to reach
They remind us that survival is a victory—but freedom is the goal.
#41for41 isn’t just about honoring 41 years of courage, grit, and defiance. It’s about joining together to create futures beyond CF for every single person living and breathing with CF.
💜 Donate $41 in honor of Emily’s 41st birthday and help create the future she—and everyone still waiting—has been dreaming of and deserves.
