Petite, precise and wise beyond her 28 years – Emily of Emily’s Entourage has forever altered my appreciation for the value of time. I’ve been lucky enough to get to know her as an Emily’s Entourage board member and want to share a few insights from our recent online correspondence:

“I find immense peace and comfort knowing that I’m doing everything I can, that I’m giving life and Cystic Fibrosis my best shot. That’s all anyone of us can do – take the deck we’re given and give it our best shot. While I haven’t lucked out with CF, I have more than my fair share of luck in many other facets of life. That recognition and appreciation isn’t lost on me for a millisecond. Ever.”

The median life expectancy of people with CF is in the mid-30s. Despite this, or perhaps in part because of it, Emily, 28, lives fully. She loves and is deeply loved by her friends and family, and honors her hunger for new knowledge and experiences by working in healthcare marketing, while recently completing a master’s degree in bioethics. Somehow she manages to fit all this and more around the three to four hours she devotes daily to airway clearance and breathing treatments for management of CF — and that’s when she’s healthy.

She has inspired the Emily’s Entourage board (and our own friends and families) to step up to help raise money to accelerate research and therapeutics for CF.

Emily is precious to us.

Time is precious to her.

We are keenly aware that other people with CF like her are equally loved. And so we we are eager to do everything we can to expedite a cure.

Living a life without regret takes courage and perseverance for all of us. But Emily takes it to a whole other level.

The world needs Emily’s talents and wisdom. Emily needs therapeutics to help stave off end-stage treatments like lung transplant.

- Jessie Stein Diamond

Throughout the month of May, help us spread awareness about CF by sharing EE updates on Facebook, Twitter and Instagram!

As an Entourage Insider, here’s how you can help:

• SPREAD THE WORD – Share updates from the EE Facebook page, Twitter, Instagram and Pinterest accounts. It literally takes 10 seconds or less for you to re-post messages, and voila, our Entourage’s efforts grow exponentially!

• CHANGE YOUR FACEBOOK COVER PHOTO – A quick cover photo update shows that you stand with EE in our goal to find a cure. Simply go to the EE Facebook page and download or share the May CF Awareness cover photo to make it your new cover photo on your personal Facebook page.  Make sure to put a link to www.EmilysEntourage.org as your photo caption. Let’s show the Facebook community just how big our Entourage is!

• FOLLOW OUR CF WARRIOR CAMPAIGN – EE is pleased to introduce its CF Warriors, who are overcoming the challenges of living with CF and are leading fulfilling, productive and inspiring lives. Share their stories to help celebrate the real people that make up the CF community! If you’re a CF Warrior, we encourage you to join the campaign by posting your CF Warrior photo to the EE Facebook page or by emailing it to us at emilysentourage@gmail.com.

• DONATE – While awareness is the focus of May, with more awareness comes more opportunity to work together to find a cure to save Emily and the 70,000 others affected by CF.  Visit www.EmilysEntourage.org to contribute.

• POSITIVE PEER PRESSURE – The impact of the 4 action items above is even greater when we all work together. Get your friends onboard to help make a difference in the fight against CF by sharing this post and asking them to take action this month too.  And remember…It takes a village to raise a child; it takes an entourage to save one.

Meet EExtraordinary Donor, “Susanna from Allentown, PA.”

What’s your connection to Emily’s Entourage?

Emily has been a lifelong inspiration for me. I met her when she was three years old and although we have not seen each other in years, it is a joy to watch from afar to see the amazing woman she has become. I am so honored to have shared a tiny bit of her life and will always feel a connection. I am very proud of Emily and of her family who obviously surrounds her with love and light.

Why do you give to Emily’s Entourage?

With high hope that fewer children will have to endure this heartbreaking, painful and horrid disease.

What impact do you hope your gift will have?

I know it is a drop in the pan, but we will continue to support EE in any way we can!

Thank you Susanna for being one of our amazing EE donors and friends!

Next, we want to shine the light on you! Let us know why you support Emily’s Entourage by filling out this quick survey.

Thank you!

We’re just back from a whirlwind trip to DC where we presented on youth activism and Emily’s Entourage at BBYO’s 2013 International Convention and the School for Ethics and Global Leadership. It was such an honor to present and we were absolutely blown away by the high school audiences!

We presented two sessions at BBYO’s International Convention (IC) and then spoke to a much more intimate crowd at the School for Ethics and Global Leadership. The common theme was how proactive, interested and passionate these high schoolers were. It was really so uplifting to experience!

One of the best parts of the day was watching our audience literally double in the second session at IC. Apparently word travels fast in this crowd!! I say that not to boast about the quality of our presentation, but because it reflects the engagement and commitment of these remarkable teenagers.

We overheard comments in the hall like, “Wait, where’s the Emily’s Entourage presentation? [Insert friend’s name] texted to say that it was awesome and I had to attend!” It was clear the high schoolers took to heart our message about using social media to spread the word. After the presentations, they immediately starting tweeting about Emily’s Entourage and encouraging their friends to join the team. Here are just a few of the tweets they posted:

“Probably the most inspirational time of my life. #EmilysEntourage #EE4CFCure.”

“So inspired by everyone involved in @EmsEnourage4CF #staystrongemily #azabbbgic2013″

“Get this trending — #emilysentourage #soinspired”

Pretty amazing, right? I’m telling you, these high schoolers were AWESOME.

I was also so impressed by the questions and creative fundraising ideas they had, and I particularly enjoyed being able to connect one-on-one with audience members after the presentation. I wish I was half as proactive and socially engaged at such a young age as these high schoolers clearly are!

People spend a lot of time criticizing youth these days. After our experience this weekend, I challenge them to spend some time with these particular groups. It was an incredibly heartening and inspiring experience for us, and we’re so excited to see what comes from it!

What I can say for sure is that with the future in the hands of these amazing, pro-social and passionate high school leaders, I have faith that we’re heading somewhere good. Snaps to that!

**Special shout-out to the Bernstein family for making this possible and putting up with the KGs for an entire 30+ hours! We couldn’t have done it without you! THANK YOU!

– Emily

My name is: Becca Denenberg

Last TV show I watched is: Homeland!

Last song I listened to is: Beauty and a Beat by Justin Bieber

My favorite gift ever: My SLR camera

My first job was as: A Little Gym Instructor

My favorite/dream vacation would be: A cruise around the world!

My favorite food is: Frozen yogurt

If I was stuck on a deserted island with only one item, it would be: My pictures!

My role model: My mom

My best friend would use the following 5 words to describe me:

1. Enthusiastic
2. Caring
3. Fun
4. Creative
5. Independent

At EE, I work on: The Social Media committee!

My connection to Emily’s Entourage is: The entire Kramer-Golinkoff family (starting with my friendship with Coby)

The most rewarding part of Emily’s Entourage is: Seeing how powerful Emily’s Entourage has become. It is really amazing how determined everyone in the entourage is to find control or a cure for Cystic Fibrosis. Whether it is by raising money or awareness (or both!), people have come out of the woodwork to support Emily’s Entourage. It is so exciting to see how many people care deeply about the mission and have joined the fight against CF. It is so uplifting to belong to such a motivated and passionate team!

The part of Emily’s Entourage that most excites me is: How big it has become since it started over a year ago! I don’t remember what life was like without Emily’s Entourage!

To follow the EE Spotlight Series and for general updates, ‘LIKE’ Emily’s Entourage on Facebook and ‘FOLLOW’ Emily’s Entourage on Twitter.

1. As a little kid, Emily had 3 imaginary friends. Their names were Louie, Nookie and Ocky. Ocky was her favorite. (Don’t tell Louie and Nookie)

2. She was an only child for 6 years and hated every second of it.

3. Good thing because she ended up as the oldest of 4!

4. She refused to go to preschool without dressing up as Pippi Longstocking. That included freckles painted on her face and pipe cleaners to make her braids stick out straight. (Next year’s Halloween costume?!)

5. Emily was first chair flutist in her high school’s district-wide orchestra.

6. Growing up, she had an obsession with whales, specifically humpback whales. She adopted 2 and even had a whale mural drawn on her bedroom wall.

7. Her first job was as a coffee barista at Bucks County Coffee Company. (This girl KNOWS her coffee)

8. Emily’s favorite food is lobster and it’s her chosen birthday meal every single year.

9. She is slightly ashamed to admit that she was rush chair of her sorority.

10. Emily’s comfort food is peanut butter on raisin toast. (YUM)

11. She is a strong believer in not repeating meals at restaurants, especially on vacation (except when you find a REAL winner — here’s looking at you, Mediterranean Deli & Catering in Chapel Hill!)

12. Emily secretly (until now!) watches the View. Every day. And has been for the past 10+ years. Thank you, DVR!

13. She drinks hot drinks with a straw.

14. Called “Emily” by few, she goes by a record number of nicknames, such as Ea, Kage, EKG, Em and Emmie.

15. She is the only person in the history of the world to break her arm by… sitting on a trampoline.

16. Her favorite movie is Dirty Dancing. She looked up to Penny.

17. Emily is a recovering gummy candy addict (recovery forced by diagnosis with Cystic Fibrosis-related diabetes). She is clean for 2 years and counting (but she still gets the cravings).

18. New (healthier) drug of choice: dried fruit.

19. For someone with advanced lung disease, she is a shockingly fast walker!

20. She wears a size 4.5 shoe.

21. Every clock in her apartment shows a different time. The only thing they have in common is that they all show the wrong time.

22. She is a BIG tennis fan. Favorite players are Rafael Nadal and Coby Kramer-Golinkoff.

23. Emily spent most of her childhood wanting to be an FBI agent or talk show hostess.

24. She is a Quaker through-and-through as a proud University of Pennsylvania alumni, graduate student, former staffer, current employee and patient!

25. Emily is the only person on earth who misses her old blackberry. (iPhone who? BBM anyone?)

26. She is proud to be unfazed by bugs. (Her sisters and roommates are forever grateful)

27. BUT, she does have an extremely severe phobia of one scary animal.

28. In fact, it is so severe that she refuses to reveal it on here.

Can you relate to one of the items on the list? Let us know in the comments section below!

On December 1st, we hosted our first-ever EE event, An Evening with Emily’s Entourage, to launch our second annual fundraising campaign and debut the new video. Material Culture generously donated their unbelievable space as the venue and Philly’s own Hope Cohen served as the emcee.

At the event, we debuted our new fundraising video, which can be viewed here. We also announced that for the second year in a row, an anonymous donor was generously matching funds raised before the new year.

With over 350 guests, An Evening with Emily’s Entourage was an amazing success! We raised over $48,000 at the event alone. We were floored by the support and the amazing energy in the room that night. We want to say a HUGE thank you to everyone who helped make it such a magical evening.

With momentum high, we worked tirelessly to spread CF awareness far and wide and raise as much funds as possible. We’re thrilled to say that the hard work seems to have paid off. This year’s campaign raised over $250,000 for CF research. That’s all because of the unbelievable generosity of YOU, the incredible entourage. THANK YOU from the bottom of our hearts.

We are blown away by the love we have received and we cannot thank you enough for your unwavering support of EE. We are so excited to see what 2013 will bring, and we remain more determined than ever to continue fighting with all of our might until we achieve control or a cure for everyone with CF.

From all of us at EE, we wish you a happy, healthy and laughter-filled 2013!

See below for some pictures from the event:

For more pictures from the event, click here.

If you haven’t had the chance to make a donation yet, it’s not too late! In fact, we just added the option for monthly recurring donations. Learn how you can help EE on our mission to put an end to CF.

Meet our next EExtraordinary Donor, “Erica from Miami”

What’s your connection or how did you find out about Emily’s Entourage?

Emily and I met during her freshman year at UPenn when she joined my sorority. I was lucky enough to have Emily as my “little little sister” in the house, which basically meant a lot of meals, outings, parties, sorority functions, mutual support and bonding. It was during a Greek leadership weekend retreat when we really grew close. There’s nothing like a sleepover party, candy, late-night girl talk and lung treatments/exercises to bring you even closer to a sister.

During those college days together I learned a lot about Cystic Fibrosis—a disease I had previously known very little about. And I quickly learned how optimistic, dedicated, funny, smart, witty, passionate, strong and loving Emily is. I learned how much she adores her family and friends and how she would do anything for them. And I learned how lucky I am to have a friend who possesses all of those qualities.

Why do you give to Emily’s Entourage?

Emily’s Entourage represents everything that Emily (or as I call her, EKG) embodies: strength, courage, love, determination and above all, optimism. Though over the years EKG and I have settled in different cities and our college days are long behind us, but we still have a bond that started almost 10 years ago and has changed me forever. I would do anything to help and be a part of a cause so close to Emily’s heart and her life.

What impact do you hope your gift will have?

I hope that my gift will help to put an end to Cystic Fibrosis and will show EKG and the 30,000 other people with CF how much they inspire me to live life to the fullest every day. And I hope that not just my gift, but also my support will help to spread the word for Emily’s Entourage.

Thank you Erica for being one of our amazing EE donors and friends!

The EExtraordinary Donor series will continue regularly on the EE blog. We want to shine the light on YOU next. Let us know why you support Emily’s Entourage by filling out this quick survey. Thank you!

My name is: Joan Boroff Denenberg

Last TV show I watched is: Castle

Last song I listened to is: Wrecking Ball

Something most people don’t know about me is: I was a mat maid (wrestling cheerleader) in high school!

My favorite/dream vacation destination: Skiing in the Alps

If I was stuck on a deserted island with only one item, it would be: My iPhone!!!

At EE, I work on: The Jewish Outreach and Event Committees

My connection to Emily’s Entourage is: My connection to Emily’s Entourage is two-fold. Becca, my daughter, has been close friends with Emily’s brother, Coby, since middle school.  Also, my son, Jesse, is Emily’s sister, Annie’s, partner in the Lower Merion Little League Challenger Baseball Program for 6 years and counting. As a result, our families have become close friends!!

The most rewarding part of Emily’s Entourage is: Seeing the power of a few good people and some great ideas!

To follow the EE Spotlight Series and for general updates, ‘LIKE’ Emily’s Entourage on Facebook and ‘FOLLOW’ Emily’s Entourage on Twitter.

Meet our EExtraordinary Donor, “S. from St. Louis.”