Emily's Entourage: Difference between revisions

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'''Emily's Entourage''' is a non-profit organization that aims to fast-track research and drug development for [[Cystic Fibrosis]] (CF) patients who carry nonsense mutations. The organization was founded by [[Emily Kramer-Golinkoff]], a CF patient with a rare nonsense mutation.
{{DISPLAYTITLE:Emily's Entourage}}
[[File:EmilysEntourage.JPG|thumb|right|Emily's Entourage logo]]


== History ==
'''Emily's Entourage''' is a non-profit organization dedicated to accelerating research and drug development for rare mutations of [[cystic fibrosis]] (CF), particularly those that do not respond to existing therapies. The organization was founded in 2011 by [[Emily Kramer-Golinkoff]], who has cystic fibrosis, along with her family and friends.


Emily's Entourage was established in 2011 by Emily Kramer-Golinkoff and her family. Emily, who was diagnosed with CF at six weeks old, carries a rare nonsense mutation of the CF gene that does not respond to existing CF therapies. The organization was created to accelerate research and drug development for this subset of the CF population.
==History==
Emily's Entourage was established to address the unmet needs of individuals with rare mutations of cystic fibrosis. The organization was inspired by Emily Kramer-Golinkoff's personal journey and the lack of treatment options available for her specific genetic mutation. Since its inception, Emily's Entourage has raised millions of dollars to fund research and has become a leading voice in the cystic fibrosis community.


== Mission ==
==Mission==
The mission of Emily's Entourage is to speed up research and development of new treatments for cystic fibrosis, with a focus on rare and nonsense mutations. The organization aims to bridge the gap between scientific research and clinical application, ensuring that all individuals with cystic fibrosis have access to effective treatments.


The mission of Emily's Entourage is to expedite life-saving treatments and a cure for those with CF who carry nonsense mutations. The organization achieves this by driving high-risk, high-reward research, building strategic collaborations, and facilitating open-source data sharing.
==Research Initiatives==
Emily's Entourage funds cutting-edge research projects and collaborates with leading scientists, researchers, and pharmaceutical companies. The organization prioritizes projects that have the potential to lead to breakthrough therapies for rare mutations of cystic fibrosis.


== Achievements ==
==Community Engagement==
Emily's Entourage engages with the cystic fibrosis community through various events, fundraising campaigns, and awareness initiatives. The organization hosts annual events to raise funds and bring together supporters, patients, and researchers.


Since its inception, Emily's Entourage has raised millions of dollars for CF research. The organization has also funded groundbreaking research and clinical trials, and has been instrumental in the development of potential new therapies for CF patients with nonsense mutations.
==Impact==
Since its founding, Emily's Entourage has significantly contributed to the advancement of research for rare cystic fibrosis mutations. The organization has helped to accelerate the development of potential therapies and has raised awareness about the challenges faced by individuals with rare mutations.


== See Also ==
==Related pages==
 
* [[Cystic fibrosis]]
* [[Cystic Fibrosis]]
* [[Genetic mutation]]
* [[Nonsense mutation]]
* [[Non-profit organization]]
* [[Gene therapy]]
 
== References ==
 
<references />
 
== External Links ==
 
* [https://www.emilysentourage.org/ Official Website]


[[Category:Non-profit organizations]]
[[Category:Non-profit organizations]]
[[Category:Cystic Fibrosis]]
[[Category:Cystic fibrosis]]
[[Category:Medical Research]]
 
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Latest revision as of 11:18, 15 February 2025

File:EmilysEntourage.JPG
Emily's Entourage logo

Emily's Entourage is a non-profit organization dedicated to accelerating research and drug development for rare mutations of cystic fibrosis (CF), particularly those that do not respond to existing therapies. The organization was founded in 2011 by Emily Kramer-Golinkoff, who has cystic fibrosis, along with her family and friends.

History[edit]

Emily's Entourage was established to address the unmet needs of individuals with rare mutations of cystic fibrosis. The organization was inspired by Emily Kramer-Golinkoff's personal journey and the lack of treatment options available for her specific genetic mutation. Since its inception, Emily's Entourage has raised millions of dollars to fund research and has become a leading voice in the cystic fibrosis community.

Mission[edit]

The mission of Emily's Entourage is to speed up research and development of new treatments for cystic fibrosis, with a focus on rare and nonsense mutations. The organization aims to bridge the gap between scientific research and clinical application, ensuring that all individuals with cystic fibrosis have access to effective treatments.

Research Initiatives[edit]

Emily's Entourage funds cutting-edge research projects and collaborates with leading scientists, researchers, and pharmaceutical companies. The organization prioritizes projects that have the potential to lead to breakthrough therapies for rare mutations of cystic fibrosis.

Community Engagement[edit]

Emily's Entourage engages with the cystic fibrosis community through various events, fundraising campaigns, and awareness initiatives. The organization hosts annual events to raise funds and bring together supporters, patients, and researchers.

Impact[edit]

Since its founding, Emily's Entourage has significantly contributed to the advancement of research for rare cystic fibrosis mutations. The organization has helped to accelerate the development of potential therapies and has raised awareness about the challenges faced by individuals with rare mutations.

Related pages[edit]