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Blog

23 Jan 2023

Emily’s Entourage (EE) Hosted 5th Annual Cocktail Reception at NACFC 2022

Back in-person for the first time since 2019, the invite-only reception brought together members of the cystic fibrosis (CF) community to celebrate EE’s achievements to date, recognize and honor the...
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06 Jan 2023

Small Steps: Keep Birthdays Coming for Everyone With CF

By Jessica Rutstein Lazarus, Emily’s Entourage board member and Emily’s lifelong best friend Being a parent to two young children means that each day I complete approximately 750 small tasks,...
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12 Dec 2022

Laces Up, Team EE! 22 Runners Raced Towards CF Cures in the Philadelphia Marathon

We learned a long time ago that the people who power Emily’s Entourage (EE) are the strongest and most tenacious group of humans in the entire world. Nowhere is that...
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19 Oct 2022

Flying High at the 2022 Evening With Emily’s Entourage “Flight of the Monarch” Gala

Talk about a night to remember! On Thursday, Oct. 13, 2022, Emily’s Entourage (EE) held our annual Evening with Emily’s Entourage gala, “The Flight of the Monarch,” at The Mann...
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27 May 2022

Exceptional in Every Way: Raising a Son Who is the Rarest of the Rare

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post is by Jason DeMott, the parent of a child...
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24 May 2022

Battling Two Deadly Diseases: My Crusade to Lower the Colon Cancer Screening Age

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post is by Anna Payne, an adult with CF. Did...
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20 May 2022

My Experience with Phage Therapy: 3 Years Later

During CF Awareness Month, Emily’s Entourage (EE) invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post is by Ella Balasa, a patient advocate and...
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13 May 2022

A Life Without Worry

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post is by Abhijit Tirumala, an adult with CF. Even...
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06 May 2022

My Brave Resilient Sister: A Sibling Perspective of CF

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post is by Emily Wasserman, a sibling of an adult...
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01 May 2022

CF Awareness Month: Putting an End to CF Once and For All

May is Cystic Fibrosis (CF) Awareness Month, a time for the entire CF community to come together to advocate, spread awareness, share personal stories, and unite behind the mission of...
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28 Apr 2022

Webinar Recap: Key Findings From EE’s “Final 10%” Survey

On April 6, 2022, Emily’s Entourage (EE) presented an informational webinar to share the findings of its inaugural global survey on the health and perspectives of people with cystic fibrosis...
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25 Apr 2022

EE Announces $178,882 in Funding for Cystic Fibrosis Research

In February 2022, we announced that Emily’s Entourage (EE) awarded $440,000 in funding for two new grants to advance cystic fibrosis (CF) research and drug development. Today, we are thrilled...
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08 Mar 2022

EE Publishes First-Ever “Final 10% Survey” and Announces Informational Webinar

Emily’s Entourage (EE) is pleased to announce that its first-ever, global survey on the health and perspectives of people with cystic fibrosis (CF) that do not benefit from approved mutation-targeted...
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28 Feb 2022

EE Awards $440,000 in Round 6 Funding for Cystic Fibrosis Research

We are thrilled to share that Emily’s Entourage (EE) has awarded $440,000 in funding for two new grants to advance cystic fibrosis (CF) research and drug development. The grants support...
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22 Feb 2022

EE Launches “Dare to be Rare” Campaign for Rare Disease Week

Rare Disease Week, which launches today ahead of Rare Disease Day on February 28, is a worldwide campaign to bring about critical awareness for rare diseases. It is a time...
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10 Feb 2022

Q&A with EE’s First-Ever Chief Scientific Officer, Dr. Chandra Ghose

We are so excited to announce that Chandra Ghose, PhD, has joined Emily’s Entourage (EE) as our first-ever Chief Scientific Officer. We caught up with Chandra to learn more about...
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04 Jan 2022

Harnessing Our Superpower

By Jessica Rutstein Lazarus, Emily’s Entourage board member and Emily’s lifelong best friend If you know Emily, then you know that her superpowers are many. She’s smart, thoughtful, compassionate, forward-thinking,...
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23 Dec 2021

“The Power of 10” Drive-in Gala Celebrates Historic Milestone For Emily’s Entourage

Everything (and we mean everything) about the 10th annual Evening with Emily’s Entourage gala, held on Saturday, Dec. 4, 2021, was remarkable. First and foremost, in celebration of our momentous...
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20 Dec 2021

Meet Our 2021 Drive-In Gala Champions

Our Emily’s Entourage (EE) Champions program celebrates philanthropic leaders who are helping EE speed lifesaving breakthroughs and a cure for people with nonsense mutations of cystic fibrosis (CF). This year,...
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22 Nov 2021

I Allowed Myself To Be Vulnerable and Was Humbled by My Community’s Immense Response 

By Jennie, mother of a child with cystic fibrosis As we head into Thanksgiving, I’m looking forward to some much-needed decompression and quality time with my family. But, as the...
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  • Home
  • Emily’s Story
  • About Us
    ▼
    • About Emily’s Entourage
    • Our Approach
    • Our Impact
      ▼
      • 2022-2023 Impact Report
      • 2021 Impact Report
      • 2020 Impact Report
      • 2019 Impact Report
    • About Cystic Fibrosis
    • Meet Our Leadership
      ▼
      • Scientific Advisory Board
      • Board of Directors
      • Leadership Team
    • Partner Organizations
  • Research
    ▼
    • Areas of Focus
    • Awarded Grants
    • Funding Opportunities
      ▼
      • Venture Philanthropy Investments
      • Collaborative Grants
      • Translational Grants
    • CF Clinical Trial Connect
    • Clinical Trial Matchmaking Program
    • The Final 10% Survey
    • Publications
    • For Researchers
      ▼
      • Research Inquiries
      • Research Resources
  • Events
    ▼
    • 2025 EE Gala
    • Events & Activities
  • Press & Media
    ▼
    • EE in the News
    • Press Releases
    • Awards
    • Videos
  • Take action
    ▼
    • Donate
    • Get Involved
    • Join CF Clinical Trial Connect
    • Shop EE
    • Sign Up for Updates
  • Blog
  • Contact
  • Donate
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