Emily's Entourage

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...

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,...

23 Feb 2024

EE Launches “Raring to Go!” Campaign for Rare Disease Week

Rare Disease Week, an annual, worldwide campaign to raise critical awareness for rare diseases, launches today in celebration of Rare Disease Day on February 29, 2024. This week is a...

22 Feb 2024

Unveiling the Promise of Gene-Based Therapies for Cystic Fibrosis: Key Highlights from EE’s 2023 Scientific Symposium

by Chandra Ghose, PhD, EE’s Chief Scientific Officer In December 2023, Emily’s Entourage (EE) hosted a scientific symposium, The Promise of Gene-Based Therapies for Cystic Fibrosis (CF), at Quorum at...

A young boy in printed swim shorts and a gray t shirt and hat wades in the ocean.

20 Feb 2024

Our Hope for More Inclusive CF Care and Treatments

In December 2021, I was sitting down to lunch with my husband and glued to my phone. I wasn’t scrolling Instagram or TikTok. Instead, I was furiously searching Google Scholar...

07 Jan 2024

Happy 39th Birthday to Emily! Will You Dream Big with Us?

By Jessica Rutstein Lazarus, Emily’s Entourage board member and Emily’s lifelong best friend Hi there, Jess here! I’m back again to wish Emily the happiest of birthdays and to share...

20 Dec 2023

NACFC 2023: Key Takeaways in Cystic Fibrosis Research

by Chandra Ghose, PhD, EE’s Chief Scientific Officer The North American Cystic Fibrosis Conference (NACFC) 2023, held in November in Phoenix, AZ, left the global cystic fibrosis (CF) community with...

16 Nov 2023

The Stars Aligned at the 2023 Evening with Emily’s Entourage: True North

We are truly seeing stars! On Saturday, October 14, 2023, Emily’s Entourage (EE) held our annual Evening with Emily’s Entourage gala, “True North,” and raised a staggering $1.3M — more...

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