I'm increasingly convinced that a lot of success can be chalked up to having the guts to try and the perseverance to keep at it
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Emily Kramer-Golinkoff
@emilykg1
Co-Founder , Patient Advocate/Speaker, Bioethicist, Digital Health Enthusiast, To-Do List Writer
Emily Kramer-Golinkoff’s Tweets
Everything changes when it becomes personal
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I’m feeling the need for another meeting of the minds
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It was his ability to listen, thoughtfully consider, and adjust that gave way to "the birth of a patient advocacy model that all disease groups use today" per , including . Thank you, Dr. Tony Fauci! www-nytimes-com.cdn.ampproject.org/c/s/www.nytime
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For the first time in history, we have a sightline to breakthroughs for the to the final 10%.
This is the hope you’ve created. THANK YOU for your faith, your devotion, and your support.
Now let’s make this happen!!!! 🚀🙏🏼
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LET’S DO THIS!!!!!
VIEW AND SHARE >>
emilysentourage.org/hopetoreality/
DONATE >> emilysentourage.org/donate
Thank you @ALittleBetterCo for helping us share our story.
#HopeToReality #EmilysEntourage #CysticFibrosis #CFAwareness #BeatCF #CureCF #CysticFibrosisAwareness
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Can anyone share a PDF of this article with me?
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"Drs didnt commend patients who expected to understand..their test results, or who pushed back against treatments..only weakly supported by evidence, or who wanted to talk to a dr on the phone instead of waiting a wk & missing..work for an in person appt"
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Heartfelt congrats to the ALS community, and all patient advocacy organizations, researchers, companies, regulators and everyone involved in the FDA approval of the 3rd ever treatment for ALS. This is huge!
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Thrilled & proud of my friend on the launch of , a nonprofit focused on screening generic drugs for #raredisease - so nobody has to be told "we've tried everything" while a generic, lifesaving drug sits on a local pharmacy shelf
"the ocean has always represented an incredible source of inspiration and beauty but also great risk. I think about science in the same way. There’s so much out there we don’t know, and so many interesting ideas to pursue, but there’s also risk."
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What is going on with #googlealerts? I just got a google alert notification for an FDA drug approval in 2010!!!! I kid you not!
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Any suggestions for good teleprompters for a mac?
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To friends on the west coast and that are able to fly, these west coast towns are giving me miss non-roadtrip travel fiercely.
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Big things are happening. Be part of it on Oct 13. Mark your calendars!
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The Evening with Emily's Entourage gala is back this year at a stunning outdoor venue under the stars and Philadelphia skyline! 
Save the date for Thursday, Oct. 13 for our 2022 gala at The Mann Center for the Performing Arts! >>
add.eventable.com/events/629e02c
Save the date for Thursday, Oct. 13 for our 2022 gala at The Mann Center for the Performing Arts! >>
add.eventable.com/events/629e02c
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“We know the dominant narrative about grief, that it is something to “move beyond” in an effort to seek “closure.” But we feel differently. There is no safe distance when it comes to loving.”
bostonglobe.com/2022/06/08/mag
“let’s supplement thoughts and prayers with concrete steps, based on nerdy evidence-gathering, based on hard conversations with people we disagree with, to reduce gun deaths so that elementary schools need not be graveyards.”
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“since 1975, more Americans have died from guns — including suicides, murders and accidents — than in all the wars in United States history, going back to the American Revolution.”
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I find this soul filling and aching at the same time. I miss travel and exploration so much. Will I ever be able to get on a plane again?? cntraveller.com/gallery/best-h
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Excited to hear EE co-founder Emily Kramer-Golinkoff speak on a panel on “Salt In My Soul,” a powerful documentary on Mallory Smith’s life with #cysticfibrosis, alongside Mallory’s mom , film director , & adult w/CF & PhD post doc Rebecca Mueller.
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(8/8) June 2, 5-6pm ET: "Salt In My Soul: A Panel Discussion of the Documentary" w/ @dianeshadersmth; @emilykg1; @Battersby4Will; moderated by #ELSI postdoc Rebecca Mueller, PhD, LCGC. Add it to your agenda to receive a FREE CODE for the movie here: elsicon2022.us2.pathable.com/meetings/virtu
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Some really good wisdom in here
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On the occasion of his 70th birthday, Kevin Kelly shares 103 bits of wisdom he wished he had known when he was younger. "Cultivate 12 people who love you, because they are worth more than 12 million people who like you." kottke.org/22/04/kevin-ke
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"We believe that people with passion can change the world for the better....and those people that are crazy enough to believe they can change the world, are the ones that actually do." (trying to forget Elizabeth Holmes' defaming of the quote)
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My family and I (+ all high risk families) are the collateral damage of the pandemic- forced to retreat from daily life w/no end in sight to enable everyone else to return to a state of "normal" that isn't safe for me as a person w/advanced stage #cysticfibrosis.
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Having been in strict isolation now for 2+ years, I feel this so much:
"Returning to what once was is not possible for all; we need, instead, a new normal, one that recognizes that everyone deserves the chance to participate in daily life."
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“The pandemic isn’t over,” writes @SarahAWildman, “and yet there is little real regard for those whose ability to participate in society hinges on the behavior of everyone else.” nyti.ms/3xiDREq
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Wonder if I will ever be able to go back to Europe
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The pick-me-up and reminder of the hopefulness of the future that we need right now. youtu.be/nTFlFyJr_U8 via
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NEEDED THIS via
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Grouches gonna grouch on Sesame Street. 
Thanks for visiting our neighborhood @BrettGoldstein! We love you!
Thanks for visiting our neighborhood @BrettGoldstein! We love you!
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Refreshing article on innovation & the value of diverse funding | "Anyone can identify Karikó in retrospect, given her persistence & her eventual discoveries. But what do we do right now to find the 2022 versions of Karikó" now?
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As someone that is obsessed with podcasts and spends countless hours listening to them each week, it was quite a thrill to be on the other side! Thank you so much for having me on #BestProblemPodcast! Cc .
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Now live on #BestProblemPodcast: @emilykg1, founder of @EmilysEntourage, shares how she’s turned her journey with #CysticFibrosis into patient advocacy with host Deborah Golden @go1denhokie. deloi.tt/3KLhOKH
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Any friends work at a company or have a connection to an outdoor venue (or rooftop) in NYC for ~100+ people? We're looking for an EE event and I'd be oh-so-very grateful for any warm intros you can provide!
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“The losses are layered and constant. And they will accrue, every day, and on every missed milestone until the day I die. I’m not sure people understand that about losing a young child.” upworthy.com/a-mother-s-let
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“it created in me this pursuit of the epic.” | That's what adversity does. It makes us realize life is fragile and uncertain (for all of us). It's now or never. Go big or go home. We get one shot - do something extraordinary w/it.
“Are we supposed to just stay in our homes indefinitely so that other people who [are covid positive] and who were told by the CDC they can go back into the world while still infectious” can just get on with their lives?”
Acc to the CDC, YES.
These past 2 yrs, I had the pleasure of being part of ' LeadersLink for leaders of patient-driven medical nonprofits. They just opened their 2nd cohort. If you're a leader of a med nonprofit, consider applying: bit.ly/3eYTkza. Apps due by 2/18/22.
A delightful, insightful list. Some faves:
25 Look closely.
59 Always have dessert.
66 Don’t save things for “best”. Wear them – enjoy them.
75 Keep your keys in the same place.
theguardian.com/lifeandstyle/2 via
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"When we focus on external forces and tie them directly to our state of mind, we’re giving up agency." seths.blog/2021/12/blamin #personal #feedly
EE is looking for an experienced digital comms professional to support our team from Jan-April (filling in for our dir of comms while on maternity leave). Remote work, flex hours (~15-20/wk), great team. Know anyone that could be a good fit? Job posting: lnkd.in/gamUueTG
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