Emily Kramer-Golinkoff's guest appearances

Emily Kramer-Golinkoff

Just Talking Podcast

The Penn HealthX Podcast

Neil Patel

Julie Ryan

Rodney Miller

Nancy Liu

Todd Tresidder

Justin McElroy

Scott Johnson

Stephen Reid

Tony Wood

Manny Hernandez

Danny O'Dwyer

Kevin Briggs

Russ Pitts

Dan Ryckert

Erin Moore

OwlTail

Today’s episode is a conversation I had with Emily Kramer-Golinkoff, who spoke to Penn HealthX last semester about her experience as a patient with Cystic Fibrosis, and in founding Emily’s Entourage, a 501c3 that accelerates research for new treatments and a cure for CF.  Since 2011, Emily’s Entourage has raised around $3 million, and has invested in research projects and start-up companies looking to develop drugs for rare missense mutations that cause CF.Emily received her undergraduate degree and Masters in Bioethics from Penn, and since founing Emily’s Entourage has been named a White House Precision Medicine “Champion of Change”, and received the 2016 RARE Champion of Hope for Advocacy Award.To learn more about Emily’s story and Emily’s Entourage, check out emilysentourage.org, or look for them on any social media platform.Map2:00 – What is Cystic Fibrosis? What is a nonsense mutation, and why does it matter? 7:20 – What was Emily’s do-or-die moment that led her and her family to found Emily’s Entourage? Where do you even start? 12:35 – Marketing, storytelling, and sharing personal information on social media 17:00 – When did Emily’s Entourage begin to mature, and how do you keep it going? 20:00 – Working with The Cystic Fibrosis Foundation 23:10 – Helping launch Talee Bio, a gene therapy company looking to cure CF, and venture philanthropy 30:00 – How can future physician leaders help empower patients to be champions for their disease?32:30 – Meeting Cheryl Sandberg, and shaking President Obama’s hand at the White House 35:00 – Where to find more info/plugsLinks Emily’s Entourage Website https://www.emilysentourage.org/ Social Media https://www.youtube.com/user/EmilysEntourage https://www.facebook.com/EmilysEntourage/Publicity http://www.cnn.com/2016/04/08/health/cystic-fibrosis-emilys-entourage-turning-points/index.html https://inspirationalwomenseries.org/2017/07/14/inspirational-woman-interview-emily-kramer-golinkoff/Talee Bio http://taleebio.com/ https://gallery.mailchimp.com/692ad2becf8753ce1c9c9a24e/files/53d6e425-a5b8-426d-9513-6626d0d1ab31/Philadelphia_startup_Talee_Bio_seeking_...brosis_Philadelphia_Business_Journal_copy.pdf The Cystic Fibrosis Foundation https://www.google.com/search?q=cystic+fibrosis+foundation&amp;oq=cystic+fibrosis&amp;aqs=chrome.1.69i57j0l5.2446j0j4&amp;sourceid=chrome&amp;ie=UTF-8Vertex Pharmaceuticals https://www.vrtx.com/

Today’s episode is a conversation I had with Emily Kramer-Golinkoff, who spoke to Penn HealthX last semester about her experience as a patient with Cystic Fibrosis, and in founding Emily’s Entourage, a 501c3 that accelerates research for new treatments and a cure for CF. Since 2011, Emily’s Entourage has raised around $3 million, and has invested in research projects and start-up companies looking to develop drugs for rare missense mutations that cause CF. Emily received her undergraduate degree and Masters in Bioethics from Penn, and since founing Emily’s Entourage has been named a White House Precision Medicine “Champion of Change”, and received the 2016 RARE Champion of Hope for Advocacy Award. To learn more about Emily’s story and Emily’s Entourage, check out <a href="http://emilysentourage.org" rel="nofollow" target="_blank">emilysentourage.org</a>, or look for them on any social media platform. Map 2:00 – What is Cystic Fibrosis? What is a nonsense mutation, and why does it matter? 7:20 – What was Emily’s do-or-die moment that led her and her family to found Emily’s Entourage? Where do you even start? 12:35 – Marketing, storytelling, and sharing personal information on social media 17:00 – When did Emily’s Entourage begin to mature, and how do you keep it going? 20:00 – Working with The Cystic Fibrosis Foundation 23:10 – Helping launch Talee Bio, a gene therapy company looking to cure CF, and venture philanthropy 30:00 – How can future physician leaders help empower patients to be champions for their disease? 32:30 – Meeting Cheryl Sandberg, and shaking President Obama’s hand at the White House 35:00 – Where to find more info/plugs Links Emily’s Entourage Website <a href="https://www.emilysentourage.org/" rel="nofollow" target="_blank">https://www.emilysentourage.org/</a> Social Media <a href="https://www.youtube.com/user/EmilysEntourage" rel="nofollow" target="_blank">https://www.youtube.com/user/EmilysEntourage</a> <a href="https://www.facebook.com/EmilysEntourage/" rel="nofollow" target="_blank">https://www.facebook.com/EmilysEntourage/</a> Publicity <a href="http://www.cnn.com/2016/04/08/health/cystic-fibrosis-emilys-entourage-turning-points/index.html" rel="nofollow" target="_blank">http://www.cnn.com/2016/04/08/health/cystic-fibrosis-emilys-entourage-turning-points/index.html</a> <a href="https://inspirationalwomenseries.org/2017/07/14/inspirational-woman-interview-emily-kramer-golinkoff/" rel="nofollow" target="_blank">https://inspirationalwomenseries.org/2017/07/14/inspirational-woman-interview-emily-kramer-golinkoff/</a> Talee Bio <a href="http://taleebio.com/" rel="nofollow" target="_blank">http://taleebio.com/</a> <a href="https://gallery.mailchimp.com/692ad2becf8753ce1c9c9a24e/files/53d6e425-a5b8-426d-9513-6626d0d1ab31/Philadelphia_startup_Talee_Bio_seeking_...brosis_Philadelphia_Business_Journal_copy.pdf" rel="nofollow" target="_blank">https://gallery.mailchimp.com/692ad2becf8753ce1c9c9a24e/files/53d6e425-a5b8-426d-9513-6626d0d1ab31/Philadelphia_startup_Talee_Bio_seeking_...brosis_Philadelphia_Business_Journal_copy.pdf</a> The Cystic Fibrosis Foundation <a href="https://www.google.com/search?q=cystic+fibrosis+foundation&amp;oq=cystic+fibrosis&amp;aqs=chrome.1.69i57j0l5.2446j0j4&amp;sourceid=chrome&amp;ie=UTF-8" rel="nofollow" target="_blank">https://www.google.com/search?q=cystic+fibrosis+foundation&amp;oq=cystic+fibrosis&amp;aqs=chrome.1.69i57j0l5.2446j0j4&amp;sourceid=chrome&amp;ie=UTF-8</a> Vertex Pharmaceuticals <a href="https://www.vrtx.com/" rel="nofollow" target="_blank">https://www.vrtx.com/</a>

23 - Emily Kramer-Golinkoff, How Non-Profits Are Fighting to Cure Cystic Fibrosis

This week I'm joined by Emily Kramer-Golinkoff, founder of Emily's Entourage. While we discuss her cystic fibrosis diagnosis, I learn what living with that disease is truly like. We also cover the origins of Emily's Entourage, and the fundraising impact the Entourage has made in very little time. There's also some talk about Medicine X and Emily's plans for Cystic Fibrosis Awareness Month. Enjoy! You can follow Emily on Twitter @emilykg1, Emily's Entourage at @EmsEntourage4CF and learn more about Emily's Entourage at emilysentourage.org. Run Time - 40:24 Send your feedback to feedback@justtalkingpodcast.com.

This week I'm joined by Emily Kramer-Golinkoff, founder of Emily's Entourage. While we discuss her cystic fibrosis diagnosis, I learn what living with that disease is truly like. We also cover the origins of Emily's Entourage, and the fundraising impact the Entourage has made in very little time. There's also some talk about Medicine X and Emily's plans for Cystic Fibrosis Awareness Month. Enjoy! You can follow Emily on Twitter <a href="http://twitter.com/emilykg1" rel="nofollow" target="_blank">@emilykg1</a>, Emily's Entourage at <a href="http://twitter.com/EmsEntourage4CF" rel="nofollow" target="_blank">@EmsEntourage4CF</a> and learn more about Emily's Entourage at <a href="http://emilysentourage.org/" rel="nofollow" target="_blank">emilysentourage.org</a>. Run Time - 40:24 Send your feedback to <a href="mailto:feedback@justtalkingpodcast.com">feedback@justtalkingpodcast.com</a>.

Episode 239 - With Emily Kramer-Golinkoff