Make Some Noise: May is Cystic Fibrosis Awareness Month!

Emily’s Entourage has many things planned to help recognize and celebrate the month of May as National Cystic Fibrosis Awareness Month! Whether you’re a loyal EE member or new to this awesome team, please take a quick moment to learn about the difference you can make in helping to save our incredible Emily and everyone with Cystic Fibrosis:

• SPREAD THE WORD
All month long, we’ll be going crazy on Facebook, Instagram and Twitter – making exciting announcements, giving you a glimpse into life with CF, and showing how unstoppable this Entourage is…together.
Join us on Facebook, Instagram and Twitter to be a part of this whirlwind movement. By liking and sharing the posts on social media and spreading the word to your friends and family, you raise the profile of CF, amplify the impact of Emily’s Entourage, and get us so much closer to a cure. It all begins with one quick click.

• CHANGE YOUR FACEBOOK PHOTO
Show that you stand with EE in our goal to find a cure for CF by changing your Facebook profile or cover photo for the month of May. Simply go to the EE Facebook page, download the May CF Awareness profile or cover photo and then upload it to your account. Let’s show the FB community just how big and mighty our Entourage is!

• DONATE
Awareness is the focus of this month (it’s in the title after all), but in truth, funding is what accelerates the pace of CF research and the chance of saving lives. Make a donation on EE’s website – and please share the message with your network – to advance our quest for new treatments and a cure.

CF Awareness Month is also jam packed with ways to get involved with EE. Check out these local events and ways to be supportive if you’re in the Philadelphia area:

Mother Warriors and Friends: Mindful Yoga Sunday, May 3 at 10 am-noon
A morning of mindful yoga, community spirit, and refreshments — all in support of Emily’s Entourage. Top local instructors will lead a one-hour, all-levels yoga class with live music by Stephen Groff and refreshments donated by Firinji.

Location: Ardmore Toyota, 219 E Lancaster Ave, Ardmore PA
Note: No registration necessary; $25 suggested donation.

Penn Orphan Disease Center’s Million Dollar Bike Ride Saturday, May 9 at 8 am
A 12-, 35-, or 75-mile bicycle ride to support research for rare diseases. All dollars donated to team EE will be matched up to $50K for research on rare nonsense mutations of Cystic Fibrosis. Learn more at www.milliondollarbikeride.org.

Location: Highline Park, 3160 Chestnut Street, Philadelphia PA
Register at http://www.alumni.upenn.edu/MDBR2015 and select “Emily’s Entourage: Cystic Fibrosis.” Cyclists can register with or without fundraising requirements.

Insomnia Cookies Fundraising Sale Date to be decided
Purchase delicious cookies at a specified Insomnia Cookies location and a portion of the proceeds will be donated directly to EE. Detailed information will be provided on Facebook, Instagram, and Twitter.

Curious about what Emily’s Entourage has been up to this year? Your support has powered EE to:

  • Surpass $1 MILLION in funding since our start in 2011!!!
  • Host a scientific symposium on Nonsense Cystic Fibrosis Mutations with the world’s top CF minds from biotech, academia, pharma and the Cystic Fibrosis Foundation
  • SHS_7463Formalize its organizational structure by reformatting the Executive Board and committees
  • Launch a revamped website design with a sleeker appearance, easier-to-use navigation, and new interactive features
  • Help Emily ring in 30 with a new sense of hope for the future!!!!

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And folks, we are far from done. More exciting announcements are coming this month!

Stay tuned for special blog posts throughout the month, including the “Just for a day” campaign where Emily was shadowed by a non-CF buddy, new Board member spotlights, and more. And that’s not it! We will also be active on Instagram with a busy weekly schedule of photos and on Twitter with a new CF fact each day.

May is CF Awareness Month Collage

And last but certainly not least…
SAVE THE DATE for the 4th Annual Evening with Emily’s Entourage Gala on Saturday, December 5, 2015. Mark your calendars and tell your friends!

While the activity on Facebook, Twitter, Instagram and our blog is fun and playful, it’s all for one simple purpose: to make noise and raise awareness of CF so we can put an end to this horrific disease once and for all.
Will you join us our efforts to get there?!

CF AWARENESS MONTH COVER PHOTO:
EE_CF Awareness Month_Cover Photo
CF AWARENESS MONTH PROFILE PHOTO:

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