Emily's Entourage
{{Short description|US nonprofit organization}}
{{Infobox organization
| name = Emily's Entourage
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| image = File:EmilysEntourage.JPG
| image_size = 220px
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| founder = Emily Kramer-Golinkoff
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| registration_id = 45-3768161
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| purpose = Accelerating cystic fibrosis research to save lives through the power of community, with a focus on "nonsense" mutations
| location = Merion Station, Pennsylvania
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| website = {{url|emilysentourage.org/}}
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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. The foundation has raised over $1 million, largely from viral fundraising through universities and video campaigns. The organization also participates in exploratory research initiatives aimed at understanding and advancing towards a cure.
Emily's Entourage is named after Emily Kramer-Golinkoff, a woman with CF, who has been the focus of an increased trend of patients participating deeply in research on and advocacy for their own conditions. She was honored at the White House as a Champion of Change for "harnessing data to take account individual differences in people's genes, environments, and lifestyles into account to improve patients' health."
Personal background
Kramer-Golinkoff was born on January 9, 1985. At six weeks old, she was diagnosed with CF.{{cite web |url=http://www.myfoxphilly.com/story/22508074/meet-the-woman-behind-emilys-entourage |title=Meet The Woman Behind Emily's Entourage |publisher=Fox 29 |date=June 5, 2013 |access-date=April 17, 2015 |url-status=dead |archive-url=https://web.archive.org/web/20150327051603/http://www.myfoxphilly.com/story/22508074/meet-the-woman-behind-emilys-entourage |archive-date=March 27, 2015 }}{{cite web | url=https://www.emilysentourage.org/emilys-story/ | title=Emily's Story | publisher=Emily's Entourage | access-date=April 17, 2015| date=2011-10-14 }} At a young age, her mother, Liza, would pound "on her chest for 45 minutes to loosen the mucus in her lungs."{{cite web | url=http://thepenngazette.com/a-matter-of-life-and-breath/ | title=A Matter of Life and Breath | publisher=The Pennsylvania Gazette | date=February 27, 2014 | access-date=April 17, 2015}}
Today{{when?|date=May 2024}}, her lungs function at about one third of the normal lung function.{{cite web|url=http://tulane.edu/news/newwave/050712_nwinsider.cfm |title=The Insider: Students join Emily's Entourage |publisher=Tulane University |date=May 7, 2012 |access-date=April 17, 2015 |url-status=dead |archive-url=https://web.archive.org/web/20150317184227/http://tulane.edu/news/newwave/050712_nwinsider.cfm |archive-date=March 17, 2015 }}{{cite web | url=http://www.huffingtonpost.com/brandon-faske/emilys-entourage_b_4770895.html | title=Emily's Entourage: College Students Rally to Cure Rare Form of Cystic Fibrosis | work=The Huffington Post | date=April 21, 2014 | access-date=April 17, 2015 | author=Faske, Brandon}} 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.{{cite web | url=http://www.jewishexponent.com/breathing-life-into-the-battle-with-cystic-fibrosis | title=Breathing Life Into the Battle with Cystic Fibrosis | publisher=The Jewish Exponent | date=December 12, 2012 | access-date=April 17, 2015 | author=Mcmanus, Diane | archive-date=June 14, 2015 | archive-url=https://web.archive.org/web/20150614034359/http://www.jewishexponent.com/breathing-life-into-the-battle-with-cystic-fibrosis | url-status=dead }}
Kramer-Golinkoff has a rare form of CF with a high prevalence among Ashkenazi Jews.{{cite web | url=http://jewishexponent.com/community/2015/01/emily-s-entourage-shows-up-in-force | title=Emily's Entourage Shows Up in Force | publisher=The Jewish Exponent | date=January 29, 2015 | access-date=April 17, 2015 | author=Elkin, Michael | archive-date=June 14, 2015 | archive-url=https://web.archive.org/web/20150614034207/http://jewishexponent.com/community/2015/01/emily-s-entourage-shows-up-in-force | url-status=dead }} Her mutation belongs to a larger category called nonsense mutations, which affect approximately 10% of CF cases worldwide and account for up to 30% genetic diseases more broadly.{{cite journal|title=Class 1 CF Mutations|journal=Frontiers in Pharmacology|pmc=3379685|pmid=22723780|doi=10.3389/fphar.2012.00117|volume=3|year=2012|pages=117|last1=Wilschanski|first1=M|doi-access=free}}
She graduated in 2003 from Lower Merion High School in Ardmore, Pennsylvania.{{cite web | url=https://www.lmsd.org/news/article/index.aspx?linkid=148&moduleid=21 | title=LMSD students join "Emily's Entourage" to raise funds, support alumna | publisher=Lower Merion High School | date=December 4, 2012 | access-date=April 17, 2015 | archive-url=https://web.archive.org/web/20150615232749/https://www.lmsd.org/news/article/index.aspx?linkid=148&moduleid=21 | archive-date=June 15, 2015 | url-status=dead }}{{cite web | url=http://www.mainlinemedianews.com/articles/2012/11/29/main_line_times/life/doc50b7b55de0b91047524938.txt | title=Main Line volunteer of the week | publisher=Main Line Media News | date=November 29, 2012 | access-date=April 17, 2015 | author=Fram, Joel | archive-date=March 7, 2016 | archive-url=https://web.archive.org/web/20160307234841/http://www.mainlinemedianews.com/articles/2012/11/29/main_line_times/life/doc50b7b55de0b91047524938.txt | url-status=dead }} She graduated cum laude from the University of Pennsylvania's Annenberg School for Communication and then completed her master's degree in bioethics at the University of Pennsylvania Perelman School of Medicine in 2009.
Emily's Entourage
Emily's Entourage was founded by Kramer-Golinkoff, her friends, and her family in December 2011 when Kramer-Golinkoff and her family sent a video to their friends and family and it raised over $40,000 in one week.{{cite web | url=http://www.nbcphiladelphia.com/the-scene/events/Local-Girl-With-Cystic-Fibrosis-is-Making-a-Difference-135346843.html | title=Local Girl With Cystic Fibrosis is Making a Difference | publisher=WCAU | date=December 9, 2011 | access-date=April 17, 2015 | author=Mimidis, Courtney}} College campuses around the country have joined the movement by forming official clubs on campus and throwing annual fundraising benefits.{{cite web|url=http://live.huffingtonpost.com/r/segment/on-campus-students-fight-cystic-fibrosis-/533430a1fe344475f900003d|title=HuffPost Live|author=|date=|work=huffingtonpost.com|access-date=11 June 2015}}{{cite web|url=http://www.wdsu.com/Entourage-Raises-Money-For-Cystic-Fibrosis/13391738|title=Entourage Raises Money For Cystic Fibrosis|author=|date=15 May 2012|work=WDSU|access-date=11 June 2015}}{{cite web|url=http://tulane.edu/news/newwave/031315_emilys-entourage_cystic-fibrosis_fundraiser.cfm |title=Tulane keeps up the fight against cystic fibrosis |publisher=Tulane University |date=March 13, 2015 |access-date=April 17, 2015 |author=Davenport, Claire |url-status=dead |archive-url=https://web.archive.org/web/20150317151719/http://tulane.edu/news/newwave/031315_emilys-entourage_cystic-fibrosis_fundraiser.cfm |archive-date=March 17, 2015 }}{{cite web | url=http://seattlemamadoc.seattlechildrens.org/emilys-entourage/ | title=How To Be An Empowered Patient: Emily's Entourage | date=March 7, 2013 | access-date=April 17, 2015 | author=Kramer-Golinkoff, Emily| work=Seattle Mama Doc }} Local groups, such as Lower Merion School District often volunteer with Emily's Entourage.
By May 2015, Emily's Entourage had raised over $1 million.{{cite web | url=http://articles.philly.com/2014-02-28/news/47743967_1_kalydeco-cystic-fibrosis-family-foundations | archive-url=https://web.archive.org/web/20140923141228/http://articles.philly.com/2014-02-28/news/47743967_1_kalydeco-cystic-fibrosis-family-foundations | url-status=dead | archive-date=September 23, 2014 | title=Emily's Entourage seeks cure for rare form of cystic fibrosis | publisher=Philly.com | date=February 28, 2014 | access-date=April 17, 2015 | author=Boccella, Kathy}}{{cite web|url=https://www.emilysentourage.org/make-some-noise-may-is-cystic-fibrosis-awareness-month/|title=Emilys Entourage » Make Some Noise: May is Cystic Fibrosis Awareness Month!|author=|date=2015-04-30|work=emilysentourage.org|access-date=11 June 2015}}
Research
Emily's Entourage has a Scientific Advisory Board to "set research priorities and vet, approve, and oversee research projects" for the organization.{{cite web | url=https://emilysentourage.org/about-emilys-entourage/scientific-advisory-board/ | title=Scientific Advisory Board | access-date=April 17, 2015| date=2014-08-20 }} In January 2014 Emily's Entourage hosted a research symposium on nonsense mutations in CF with a focus on Kramer-Golinkoff's particular rare mutation with leading researchers from biotech, academia, pharma and the Cystic Fibrosis Foundation in partnership with the Penn Orphan Disease Center to spur discovery of new treatments for those with nonsense CF mutations.{{cite web|url=http://news.pennmedicine.org/blog/2015/02/focus-on-rare-diseases-is-common-at-penn-medicine.html|title=Focus on Rare Diseases is Common at Penn Medicine - Penn Medicine News Blog|work=pennmedicine.org}}{{cite web|url=https://www.emilysentourage.org/emilys-entourage-symposium-on-nonsense-cystic-fibrosis-mutations/|title=Emilys Entourage » Emily's Entourage Symposium on Nonsense Cystic Fibrosis Mutations|work=emilysentourage.org|date=2015-01-28}}
Kramer-Golinkoff also published "A Lesson in Participatory Research for a Rare Mutation of Cystic Fibrosis" in the Journal of General Internal Medicine.{{Cite journal|title = A Lesson in Participatory Research for a Rare Mutation of Cystic Fibrosis|journal = Journal of General Internal Medicine|date = July 17, 2014|issn = 0884-8734|pmc = 4124119|pmid = 25029983|pages = 808–809|volume = 29|issue = 3|doi = 10.1007/s11606-014-2923-9|first = Emily|last = Kramer-Golinkoff}} For her work towards finding new cures, she was honored at the White House as a "Champion of Change".{{Cite web|title = The White House Champions of Change Program|url = https://obamawhitehouse.archives.gov/champions|access-date = 2015-07-13|url-status = live|archive-url = https://web.archive.org/web/20170120190811/https://obamawhitehouse.archives.gov/champions|via = National Archives|work = whitehouse.gov|archive-date = 2017-01-20}}{{Cite web|title = Emily's Entourage: Giving Hope to Orphans of Orphan Disease|url = https://obamawhitehouse.archives.gov/blog/2015/07/09/emilys-entourage-giving-hope-orphans-orphan-disease|access-date = 2015-07-13|via = National Archives|work = whitehouse.gov|date = 2015-07-09}}{{Cite web|title = White House honors 9 as precision medicine champions|url = http://medcitynews.com/2015/07/white-house-honors-9-as-precision-medicine-champions-of-change/|website = MedCity News|access-date = 2015-07-13|date = 2015-07-06}}{{Cite web|title = Local Woman Named White House 'Champion Of Change'|url = http://philadelphia.cbslocal.com/2015/07/08/local-woman-named-white-house-champion-of-change/|access-date = 2015-07-13|date = 2015-07-08}}{{Cite web|title = Montco woman to be honored by White House|url = http://www.phillyvoice.com/montco-woman-be-honored-white-house/|website = PhillyVoice|access-date = 2015-07-13}} 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."{{Cite web|url = https://www.youtube.com/watch?v=yi1Tw1narVo|title = White House Champions of Change - Precision Medicine|date = July 8, 2015|access-date = July 13, 2015|website = Youtube|publisher = The White House|last = |first = }}
An NF1 clinical trial is undergoing FDA approval. Kramer-Golinkoff said, "I realized I could wait on the sidelines and pray for a miracle or get into the game and try to make one."{{Cite web|title = The Art of Medicine: Synergy Leads to Healing, at Medicine X {{!}} Ed|url = https://www.mysciencework.com/news/12286/the-art-of-medicine-synergy-leads-to-healing-at-medicine-x-ed|website = www.mysciencework.com| date=7 December 2015 |publisher = |access-date = 2015-12-08}}
Media
Kramer-Golinkoff and Emily's Entourage have received significant regional and national media coverage. The attention has driven donations as well research opportunities and public awareness. Philadelphia Magazine profiled Emily as a "Health Hero" in September 2015. 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."{{Cite web|title = Meet a Health Hero: Emily Kramer-Golinkoff|url = http://www.phillymag.com/be-well-philly/2015/09/14/meet-a-health-hero-emily-kramer-golinkoff/|website = Philadelphia Magazine|date = 14 September 2015|publisher = |access-date = 2015-12-08|language = en-US}} 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. Case in point: The test tubes that fill the testing laboratories at USCF are all marked with random alphanumerical codes—except those marked with Emily's name."{{Cite web|title = 30-Year-Old Woman Races Time to Find Cure for Rare Form of Cystic Fibrosis: It's 'Just Outside of Our Grasp'|url = http://www.people.com/article/emily-kramer-golinkoff-cycstic-fybrosis-research|website = PEOPLE.com|access-date = 2016-02-04}}
In Philadelphia Style magazine Kramer-Golinkoff emphasized her organization's personal approach: "We're trying to use my story to humanize the disease... People really respond to faces and stories and families in a way that's different. 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."{{Cite web|title = Why This Main Line Nonprofit Is Getting Support from the White House|url = http://phillystylemag.com/the-philly-nonprofit-getting-attention-from-president-obama|website = phillystylemag.com|access-date = 2016-02-04|archive-date = 2016-02-04|archive-url = https://web.archive.org/web/20160204095717/http://phillystylemag.com/the-philly-nonprofit-getting-attention-from-president-obama|url-status = dead}} Yahoo! Health profiled Kramer-Golinkoff. She said, "My disease is progressing and our race is getting more urgent. We're doing some really groundbreaking work that is changing the paradigm of how research is done, what gets attention, who the players are, and what the pace of progress is. We are constantly pushing the envelope because I literally don't have time to wait."{{Cite web|title = She's 31 and Has Advanced Cystic Fibrosis — But Emily (and Her 'Entourage') Won't Give Up|url = https://www.yahoo.com/health/shes-31-and-has-advanced-cystic-fibrosis-but-161939307.html|website = www.yahoo.com| date=22 January 2016 |access-date = 2016-02-04}}
CNN also profiled Kramer-Golinkoff. University of Pennsylvania Physiology professor Kevin Foskett said in the article, "Emily and her family want research focused on her mutation to be as focused and accelerated as possible. At one level, that sounds a little selfish, until you realize that her type of mutation, a 'nonsense' mutation ... is responsible for disease in many other genetically inherited forms of disease... Emily's story is compelling. If you've met Emily... you cant help but become engaged and energized." Kramer-Golinkoff said in that piece, "Obviously our prayer and dream is to have a breakthrough. But we also realize that it might not happen, or it might not happen in time for me. And I think that in the worst case scenario, even if it never could help me, there is a peace I get from at least knowing I'm doing everything I can, and it's not for lack of trying."{{Cite web|url=http://www.cnn.com/2016/04/08/health/cystic-fibrosis-emilys-entourage-turning-points/index.html|title=Cystic fibrosis research: Emily's Entourage raises millions|author=Chris Welch|website=CNN|date=8 April 2016|access-date=2016-05-09}}
See also
References
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{{Mutation}}
{{ABC transporter disorders}}
{{Channelopathy}}
Category:Cystic fibrosis organizations
Category:Health charities in the United States
Category:Lower Merion Township, Pennsylvania
Category:Medical and health organizations based in Pennsylvania