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Dear Jena,
The holidays. For so many, they’re filled with joy and laughter. But for others, they bring heartache—a reminder of those we’ve lost and the empty spaces they leave behind.
It’s been 18 years since you’ve been gone. Eighteen years since I last held you, heard your laugh, or looked into your beautiful eyes. Yet somehow, you still find ways to let me know you’re near. The pennies, the #13s, the perfectly timed #NoCoincidence moments—they remind me that love never ends.
The day after Thanksgiving, your lungs collapsed, and we spent a week in the ICU, praying for a transplant that never came. That week was a roller coaster of hope, heartbreak, and the unbearable reality of letting you go.
Even now, the pain can hit me like it was yesterday. Grief has no timeline, no rules. The empty seat at the table, the memories that flood back without warning—they’re constant reminders of what was and what will never be.
But Jena, you’ve taught me something beautiful: love transcends time and space. Even though you’re not physically here, you are alive in my heart, in the lives you’ve touched, and in the signs you send.
You’ve shown me how precious it is to treasure the moments with those we love, whether they are here or have gone.
To anyone who feels the ache of loss this season, know this: love never ends. Your loved one is still with you—in your heart, in your memories, and in those small, unexpected signs.
Be gentle with yourself. Grief isn’t something to “get over”; it’s something you learn to carry.
And to those with their family whole this holiday season, hold them close. Hug tighter. Say “I love you” more. Life is unpredictable, and love is the greatest gift we have.
Jena, you are my proof that love never ends. Thank you for guiding me, for reminding me to let go of the little things, and for teaching me to live fully.
I miss you more than words can say. You’ll always be in my heart.
See you in my dreams, my sweet girl.
Love you more,
Mommy ❤️
✨ Today marks 16 years since **Beyond Breathing** became a book. What began as a diary—a way to navigate the depths of losing my daughter Jena to Cystic Fibrosis—has transformed into a lifeline for so many. I’m humbled by the impact it has had on others and grateful that Jena continues to touch lives, even from heaven.
If you ever find a penny or a peppermint patty, take a moment to look up and remember: love never ends. 💖
Thank you to all who continue to keep her spirit alive! #BeyondBreathing #LoveNeverEnds #jenapennies
Happy 57th Birthday, Marc! 🎉
You’ve gone from being the best boyfriend to an incredible husband, a fantastic father, to the most wonderful, sentimental, and playful Papa. I love sharing all the amazing versions of you, but the one we share together is the absolute best.
❤️Here’s to making more meaningful memories together! I love you, 💋
🌟 What an unforgettable night at the Cystic Fibrosis Foundation Minnesota Breath of Life Gala!
I had the honor of sharing my story with 650 incredible individuals who are just as passionate about conquering Cystic Fibrosis as I am. ❤️Together, we are committed to making CF stand for "Cured Forever, for Everyone!"
I’m beyond thrilled to share that we raised an astonishing $900,000 for The Cystic Fibrosis Foundation! 🎉
A heartfelt thank you to everyone who was so kind, generous, and welcoming.
Minnesota, you have truly touched my heart.
I already miss you all and can’t wait for the day we celebrate a future without CF!
💙 #BreathOfLife #CureCF #Grateful
🎃Happy Halloween Everyone!
👉 Remember, calories don’t count but memories do! #Throwback1995
#tbt❤️
#tbt #throwback😍
#throwbackthursday
#halloween #halloween🎃
💕 us
Wow, what an incredible 5 days at The Drive - Driven by a Cure, the Cystic Fibrosis Foundation’s Ultimate Golf Experience! 🏌️♂️
💙 When the CF family comes together, we don’t just show up—we show out in full force, making every moment unforgettable! From Marc checking off his bucket list by playing at Torrey Pines to sharing laughs and heartwarming moments, this event was truly unforgettable.
Marc lived his best golf life while I had the chance to connect with fellow CF moms and form lifelong bonds with amazing new friends who are now family.
A huge round of applause goes to our fantastic hosts and entertainers. Tommy Gross, our hilarious emcee, had us in stitches all week with his dry wit and charm. And let’s talk about the incredible Victoria Shaw, soon-to-be inducted into the Nashville Songwriters Hall of Fame! She, along with her talented mother Carole and daughters Ruby and Ava, had us singing along to hits like “The River” and “The Way You Love Me,” 🎶
Country sensation Cooper Alan brought down the house with his infectious energy and amazing voice. His hits “Take Forever,” “Feel Like Hell Today,” and “Can’t Dance” had us dancing in the aisles and throwing down a Coors! 🎤✨ If you haven’t seen him on your social feeds yet, what are you even doing?
Robin Treadway, our auctioneer extraordinaire for over 40 years, he’s helped raise more money for CF than we can count. Your dedication to the CF community is truly inspiring, Robin! 👏
But the real MVPs? All of YOU. Your donations, participation, and unwavering support drive us closer to a cure every day. Every laugh, every dollar, and every conversation brings us that much nearer to the finish line.
From the bottom of my heart, THANK YOU! Together, we are unstoppable! 💪
Until next year, keep swinging those clubs, and maybe Marc will finally win that Ultimate Champion Jacket! 😉 #TheDrive #CureCF #CFWarriors #GolfForACause #DrivenByLove #MarcAtTorreyPines #ThankYou #TheDrive
Hope on the Green ⛳️
What an unforgettable day at the Cystic Fibrosis Columbus Day Charity Golf Classic!
As a CF mom, with one child in heaven and another fighting the daily uphill battle, today touched my heart in ways words can barely describe.
It was a sold-out event—not surprising, because when hearts are engaged, great things happen. We gathered in honor of our loved ones battling Cystic Fibrosis and to support those we’ve lost too soon. Jennifer Blackmon, a fellow CF mama, spoke passionately about her incredible daughter, Dayna, and the unimaginable struggles they have faced. Her words reminded us all of the resilience, strength, and hope that define this community.
The weather was a little breezy with a slight drizzle, but nothing could dampen the spirit of the day. The laughter, competition, and shared mission to find a cure carried us through. Thousands of dollars were raised—dollars that bring us closer to making CF stand for “Cure Found.”
A special thank you to Dean Marquis, and his entire committee, for their tireless effort in organizing such a wonderful event. Their dedication, along with the hard work of all the volunteers, corporate sponsors, and golfers, made today an absolute success.
If you missed it, mark your calendars now for October 2025—our Columbus Day Cystic Fibrosis Golf Event is one you won’t want to miss. Together, we are making a difference. Together, we are giving hope to those with CF.
Because at the heart of everything we do, we believe in a future where every person with CF can live a long, healthy life. Thank you to everyone who made today possible—you are helping us get closer to that dream.
@cf_foundation
#CureCF @cff_gnyc #CFWarriors #untilitsdone @cff_gnyc @marquis2209 #CFFGolfClassic2024 #MakeADifference The Powelton Club @cassalina_e
The past five days at the North American Cystic Fibrosis Conference in Boston were filled with gratitude and emotion. 5,000 people from 42 countries for one cause—Cystic Fibrosis—was unforgettable. The dedication of brilliant minds working for CF is truly inspiring. We’ve made great progress, but our journey continues.
Soul-Stirring Connections
Meeting dedicated scientists, researchers, and clinicians who work tirelessly to improve CF patients’ lives was inspiring. Every conversation was filled with hope and innovative ideas for treatments—and ultimately, a cure. I’m grateful for all the efforts being made to ensure healthier futures for our loved ones.
To CF parents: we are in this together, fighting for our children’s futures. Let’s continue supporting one another, as our strength lies in unity.
To our pharma family: thank you for your dedication. Your commitment to breakthroughs gives us hope. We need you now more than ever, and we appreciate all you do.
Inspiration from the CF Community
Adults living with CF, you are my inspiration. Your resilience shows us that brighter days are ahead.
Where Strangers Become Family
This conference unites people from all over the world in our common fight against CF, forging bonds that are unbreakable.
A special shout-out to Bob Emmelkamp—a true altruistic heart! Thank you for hosting such a beautiful dinner. Your generosity and support mean so much to all of us.
Highlights from the Plenaries
• Genetic Therapies: Progress in CF genetic therapies, led by Daniel Siegwart, PhD, could restore CFTR function for all mutations.
• Cystic Fibrosis-Related Diabetes (CFRD): Experts Rebecca Hull-Meichle, PhD, and Melissa Putman, MD, shared groundbreaking advances in CFRD treatments as patients live longer.
• Reproductive Health: New insights into fertility and pregnancy challenges for CF patients, with more family-building options available.
Thank you, Boston, for an unforgettable NACFC 2024. Let’s keep pushing forward until it’s done—for everyone.
#CysticFibrosisFoundation #NACFC2024 @dylan.mortimer @computerbob77 @marquis2209 #Boston #UntilItsDone #CFWarriors
