Emily's Entourage is a nonprofit organization that raises money and awareness to help find a cure for rare ("nonsense") mutations of cystic fibrosis (CF), a genetic disorder that generally affects a person's lungs and digestive system.

[1][2] At a young age, her mother, Liza, would pound "on her chest for 45 minutes to loosen the mucus in her lungs.

[4][5] Emily undergoes a daily regimen of three to four hours of "airway clearance and breathing treatments" in addition to taking approximately 30 pills and four shots of insulin.

[12][13][14][15] Local groups, such as Lower Merion School District often volunteer with Emily's Entourage.

[19][20] Kramer-Golinkoff also published "A Lesson in Participatory Research for a Rare Mutation of Cystic Fibrosis" in the Journal of General Internal Medicine.

[22][23][24][25][26] The honor focused on "work being done by patients, researchers, innovators, and advocates who are advancing our understanding of health and disease by harnessing data to take account individual differences in people's genes, environments, and lifestyles into account to improve patients' health.

Kramer-Golinkoff said, "My biggest motivations for working my hardest to stay as healthy as possible — even in the face of an advanced and progressing fatal illness — are my family and friends, this burning desire to do more things and see more places, and the unbelievable Entourage that rallied behind me to give me and so many others real, tangible hope for that chance.

"[29] People magazine wrote, "Perhaps the most critical of Emily's Entourage's efforts has been its success in putting a beautiful face on an ugly issue.

There are so many important causes out there, but we can touch people's hearts by making them feel like I could be anyone's daughter or sister or best friend.