Emily's Entourage

30 Apr 2025

Glitter and Grit: Finding Hope Through Art and Cystic Fibrosis

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s post features Dylan Mortimer—an artist and double lung transplant recipient who...

30 Apr 2025

CF Before Birth: How One Couple Used Modulators for In Utero Treatment to Improve Health Outcomes for Their Child

During CF Awareness Month, Emily’s Entourage invites members of the CF community to share their stories. Today’s blog post features Chris and Erica Molaro, a couple who took action to...

30 Apr 2025

Lines of Progress: My Journey from Critical Illness to Change-Making Advocacy

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights the story of Amanda Boone, an adult with...

30 Apr 2025

The CF Brother Who Became a CF Scientist

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights the story of Miquéias Lopes Pacheco, PhD, a...

30 Apr 2025

Lines of Connection, Paths to Progress: This CF Awareness Month, It’s Time to #CrossOutCF

Cystic Fibrosis Awareness Month 2025 is here, and at Emily’s Entourage (EE), we’re celebrating the unwavering spirit of the cystic fibrosis (CF) community. This month is fueled by grit, courage,...

27 Mar 2025

The Delivery of Hope: Reflections from the 2025 EE Scientific Symposium on Gene Delivery

For the final 10% of the cystic fibrosis (CF) community—those who do not benefit from mutation-targeted therapies—the wait for a lifesaving breakthrough has been challenging. For many, these are more...

19 Feb 2025

Introducing #ExtraordinRARE 2025: A Bold New Rare Disease Week Expedition

Every journey begins with a single step. For the rare disease community, that step is often taken against formidable odds—navigating a landscape where too many remain overlooked, underfunded, and left...

07 Jan 2025

What’s the best that could happen?

By Jessica Rutstein Lazarus, PsyD, Emily’s Entourage board member and Emily’s lifelong best friend Happy 40th Birthday, Em! Happy New Year, everyone! And Happy birthday to Emily, the most inspiring,...

04 Dec 2024

Racing Toward a Cure: Team EE Shines in the 2024 Philadelphia Marathon

There’s a certain magic to the weekend of the Philadelphia Marathon that’s hard to put into words—a mix of determination, excitement, and heart that fills the air. This year, Team...

12 Nov 2024

Lacing Up for Hope: Meet the Runners of #TeamEE Racing for CF Breakthroughs

In just a few weeks—on November 23 and 24, 2024—our unstoppable #TeamEE runners will lace up their sneakers, hit the pavement, and take on the Philadelphia Marathon. But they’re not...

07 Nov 2024

NACFC 2024: Top Boston Breakthroughs for the Final 10%

By Chandra Ghose, PhD, Chief Scientific Officer at Emily’s Entourage Every fall, the North American Cystic Fibrosis Conference (NACFC) brings together our community with renewed purpose and fresh insights. This...

23 Oct 2024

Blooming Together: A Night of Hope at the 2024 Emily’s Entourage Gala

On a radiant Saturday evening, October 5, 2024, the Mann Center for Performing Arts in Philadelphia became a beacon of hope and unity as Emily’s Entourage (EE) hosted its annual...

14 May 2024

Dare to Dream: A Life Filled with Adventure, Purpose, and Impact

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights the story of Mel Kotlyar, an adult with...

30 Apr 2024

Keep Moving Forward: Tips For Staying Positive in The Final 10%

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights the story of Jarrod Landau, an adult with...

26 Apr 2024

Rowing to a Future Where Everyone with CF Can “Dare to Dream”

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights the story of Sophie Pierce, an adult with...

24 Apr 2024

Crossing out CF Gave Me Time To Pursue Love, Career, and Community

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights the story of Rebecca Mueller, an adult with...

24 Apr 2024

Staying Focused on the Hard Things

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights the story of Noah Singer, parent of a...

23 Apr 2024

The Future We All Deserve

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights the story of Tré LaRosa, an adult with...

11 Apr 2024

May is Cystic Fibrosis Awareness Month: Let’s Dare to Dream Beyond CF!

May is Cystic Fibrosis (CF) Awareness Month, a time for the community to band together to spread awareness, advocate, share personal stories, and unite behind the mission of accelerating breakthroughs...

28 Mar 2024

Q&A with EE’s First-Ever Chief of Staff, Genevieve Mack

We are thrilled to share that Genevieve Mack has officially joined Emily’s Entourage (EE) as our first-ever Chief of Staff. In a recent interview, we learned more about Genevieve’s hobbies,...

Blog

Glitter and Grit: Finding Hope Through Art and Cystic Fibrosis

CF Before Birth: How One Couple Used Modulators for In Utero Treatment to Improve Health Outcomes for Their Child

Lines of Progress: My Journey from Critical Illness to Change-Making Advocacy

The CF Brother Who Became a CF Scientist

Lines of Connection, Paths to Progress: This CF Awareness Month, It’s Time to #CrossOutCF

The Delivery of Hope: Reflections from the 2025 EE Scientific Symposium on Gene Delivery

Introducing #ExtraordinRARE 2025: A Bold New Rare Disease Week Expedition

What’s the best that could happen?

Racing Toward a Cure: Team EE Shines in the 2024 Philadelphia Marathon

Lacing Up for Hope: Meet the Runners of #TeamEE Racing for CF Breakthroughs

NACFC 2024: Top Boston Breakthroughs for the Final 10%

Blooming Together: A Night of Hope at the 2024 Emily’s Entourage Gala

Dare to Dream: A Life Filled with Adventure, Purpose, and Impact

Keep Moving Forward: Tips For Staying Positive in The Final 10%

Rowing to a Future Where Everyone with CF Can “Dare to Dream”

Crossing out CF Gave Me Time To Pursue Love, Career, and Community

Staying Focused on the Hard Things

The Future We All Deserve

May is Cystic Fibrosis Awareness Month: Let’s Dare to Dream Beyond CF!

Q&A with EE’s First-Ever Chief of Staff, Genevieve Mack

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