Emily's Entourage

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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,...

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...

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,...

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...

04 Nov 2021

How It Started: A Look Back at the Launch of EE’s Champions Program

By Nicholas Dinges, board member, Emily’s Entourage I’ve known Emily for 25 years now (we went to middle school, high school, and even college together!). But it wasn’t until 7...

28 Oct 2021

Let’s Be the Light for the Final 10% of People With CF

By Erin Moore, mother of a child with cystic fibrosis “They told you he has CF, right?,” the doctor said while he finished dressing in his PPE upon entering our...

07 Oct 2021

A Lasting Legacy: The 3rd Annual Zack Bassin Memorial Golf Outing

On Friday, Aug. 27, 2021, those who loved Zack Bassin gathered to play a round of 18 holes — and it was so much more than that. This was their...

23 Sep 2021

Stolen Dreams and Freedom: An Adult With CF’s Journey to a Double-Lung Transplant

On Thursday, July 15, 2021, Emily’s Entourage (EE) held a “Patient Listening Session” with the U.S. Food and Drug Administration (FDA) to advocate on behalf of the final 10% of...

02 Aug 2021

Racing Against a Ticking Time Bomb: A Father’s Plea to Speed Breakthroughs for His Child With Cystic Fibrosis