EE’s Top 10 of 2015

2015 was MAJOR. So insanely major that the only way to sum it up was with a gold old top 10 list and an awesome video of highlights at the end. So here goes–

1. We kicked off the year with our first ever scientific symposium in January. In partnership with the Penn Medicine Orphan Disease Center, we brought together leading scientists and biotech and pharma companies from around the world and established ourselves as major brokers in the field of CF and especially for rare nonsense mutations, the cause of approximately 1/3 of all genetic diseases (including Emily’s rare form of CF). Read more.

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2. We got a transformative gift of $400K. It catapulted us to new levels and exponentially increased our potential for impact. Watch video.

3. We hit and then quickly surpassed the million dollar mark, putting us on the map and showing the world we’re not some fly by night foundation. We are here to stay — until there’s a cure.

3. We were named one of the nation’s 9 Precision Medicine Champion of Change by the White House, an incredible recognition of our groundbreaking work that elevated us to new heights in the national discussion about the future of medicine. It was also a huge platform for CF and patient advocacy. Read more.

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4. We held a second scientific symposium in September where we brought together not only leading CF scientists but also rockstar scientists from other fields to share novel ideas and technologies. Our goal was to tear down disease silos and promote innovation, collaboration and most of all, faster breakthroughs. Read more.

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5. We realized we can be part of the solution. Scratch that, we NEED to be part of the solution. And so Emily traveled to University of California San Francisco and University of Alabama Birmingham to donate millions of her own cells to advance science and promote study of nonsense mutations of CF.

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6. We built strong relationships with the major biotech companies in the CF space, including giving a talk at PTC Therapeutics and visiting the Vertex labs in San Diego.

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7. We realized being a one trick pony with only an annual appeal was limiting and it wouldn’t lead to the fast breakthroughs we needed. So we diversified. We are so grateful to the awesome EE’ers who ran in marathons, biked in races, held and participated in yoga events, stepped up to be Emily’s Entourage Champions at our annual gala and so much more. You helped grow EE into a multidimensional fundraising machine and driver of innovation. See pics here and read more here and here.

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8. We developed relationships with some mentors and advisors who took us under their wing, outlined a path forward, and gave us unprecedented hope for the future.

9. We realized the power of the media and that journalists can be awesome partners in this desperate quest for breakthroughs. This year, we got some love from the press including spots on NBC10, CBS Philly, Fox 29, Philly Style, as well as awesome nominations for Philly Health Hero by Philly Mag and “Women on the Move” by Main Line Today. We even flew to LA to film an episode for the CBS show, The Doctors, which will air on Jan 11. Set your DVRs, there’s a surprise in store! And there’s much more to come on this front too, so stay tuned.

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10. We started to really, deeply believe, in our guts, that we can do this! That our dream of a breakthrough for Emily and everyone like her IS possible. And that we’re building the team that’s poised to do it. And that, dear friends, includes you.

THANK YOU for being the fuel that propelled this hot air balloon of hope to take off and soar. WE ARE DOING THIS. And it’s all because of you.

So this New Year’s Eve, as we bid adieu to 2015 and welcome 2016 with outstretched arms, we do it with passion in our heart, tenacity in our belly, and a glimmer of hope in our eyes. To 2016 being the year of getting things done… of promise realized… of dreams made… of lives saved… and an Entourage proving that we are, truly, the little foundation that could. LET’S DO THIS!!!

Happy, healthy, dream-making, mountain-moving, paradigm-shattering 2016 to you, our dearest friends.

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