Emily's Entourage Blog
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Emily's Entourage is a nonprofit organization that raises money and awareness to help find a cure for rare mutations of cystic fibrosis, a genetic disorder that generally affects a person's lungs and digestive system. Our goal is to expedite life-saving treatments and a cure for those with nonsense mutations of CF who are waiting with bated and fading breath.
Emily's Entourage Blog
5d ago
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, habits, the significance of her role, and the motivation driving her decision to join EE. What’s your go-to morning ritual to kickstart your day with... Read More ..read more
Emily's Entourage Blog
2M ago
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 special — and important — time for the rare disease community to unite and demonstrate collective support to raise vital awareness and ultimately drive more... Read More ..read more
Emily's Entourage Blog
2M ago
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 the University City Science Center in Philadelphia, PA. The symposium brought together leading minds (over 34 speakers and 86 attendees from 13 countries) from within... Read More ..read more
Emily's Entourage Blog
2M ago
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 for any cystic fibrosis (CF) mutation that was common in Ecuadorian populations. I felt out of control and upset. I was fearful about my son... Read More ..read more
Emily's Entourage Blog
4M ago
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 renewed excitement and energy. The annual, highly-anticipated meeting is a melting pot of researchers, healthcare professionals, and advocates dedicated to advancing research, care, and drug... Read More ..read more
Emily's Entourage Blog
5M ago
Philadelphia, PA – November 21, 2023 – Emily’s Entourage (EE), an innovative 501(c)3 that accelerates research for new treatments and a cure for the final 10% of people with cystic... Read More ..read more
Emily's Entourage Blog
5M ago
The research is focused on the development of novel splice-switching antisense oligonucleotides (ASOs) for one of the most common CFTR variants in people of African heritage. Lower Merion, PA –... Read More ..read more
Emily's Entourage Blog
5M ago
The research is focused on developing polymeric vehicles to improve the delivery of nucleic acid-based therapeutics to target tissues and cells in the body for the treatment of CF. Lower... Read More ..read more
Emily's Entourage Blog
5M ago
The research is focused on developing partially humanized mouse airways to be utilized for testing the efficiency of gene delivery methods, including AAV vectors and lipid nanoparticles. Lower Merion, PA... Read More ..read more
Emily's Entourage Blog
5M ago
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... Read More ..read more