From time to time we invite guest bloggers who are part of the Emily’s Entourage (EE) community to contribute their unique voices to our blog. Today’s guest blogger is our treasured EE Board Member and Emily’s lifelong best friend, Jessica Rutstein Lazarus, whose post officially launches our #34for34 campaign and virtual birthday celebration for our dear Emily.
For anyone who doesn’t know me, I’m Jess, one of Emily’s best friends since middle school and I also have the honor of sitting on the EE Board of Directors since EE’s founding. This year, I want to continue my tradition of kicking off our campaign in honor of Emily’s 34th birthday.
As many of you may already know, Emily is a truly phenomenal speaker. Whether speaking at an EE gala or presenting to the FDA, her thoughts are eloquently expressed and easily relatable. Her words linger in my mind and the urgency and passion she conveys always drive me to act. Emily continues to impress me with her ability to be raw and genuine. She is able to open up in a way that would intimidate many of us if we found ourselves standing behind a podium in front of 500 audience members!
Her speech proved no different at the 7th Annual Evening with Emily’s Entourage on December 1st, and I was personally blown away. She explained that the simple and thoughtful question “how are you?” can be a loaded one for her to answer.
Although I am clearly one step removed, I often battle the same conflict of how to most genuinely answer that question about Emily. I am incredibly fortunate to have such thoughtful friends and family in my own personal network who quite frequently ask me, “how is Emily feeling?” or “how is Emily doing lately?,” and I stumble over my response. How can I best answer such a complicated question?
As Emily herself pointed out, EE continues to explode and exponentially expand with each minute, day, and week. It’s so exciting sharing this type of news with my network and seeing their excitement in response to the most recent audience Emily spoke to, where she’s traveling next for an important meeting, or updates on the research we’re funding. I smile each time I get a text from Emily that starts, “You won’t believe who I just connected with…”, “Guess what company just reached out to us…” or “We just received such a generous donation!”
When I glance at my phone and see these types of messages I’m immediately filled with a surge of new hope and motivation because I know just how valuable each new connection, donation, and research study is to our goal.
But on a personal side, I also receive texts that read “fighting a cold, worried I’ll have to go into the hospital soon” or “not feeling well today, hoping it doesn’t progress.” It’s hard to explain the significant fear and concern I feel in response. I know how stoic Emily is, and I know she relentlessly tries to push herself through most difficult moments. So, when she herself expresses concern, it stops me in my tracks.
The question of how she’s doing is not only hard for Emily to answer, but it’s also hard for me to answer, as her best friend, confidante, EE teammate, board member, and eternal supporter.
So, how would I really answer the question of how she’s doing?
I would say, Emily is running out of time.
We use that phrase a lot, but it’s because nothing describes her situation more accurately. Emily is running out of antibiotics that help quell her infections. She’s running out of treatment options faster than we can hand her new ones. She’s experiencing new and terrifying consequences of CF that previously she had managed to avoid. Simply put, her disease is progressing faster than we can control it.
For every special moment we have, every girls dinner or book club get together that I am lucky enough to share with Emily, I also see the daily reminders that time is running out. I know that my wonderful friends and family will ask me about Emily’s birthday this year, and I want to be able to tell them honestly that I am filled with hope. YOU can be that hope.
The greatest birthday gift that we can give Emily—and the whole CF community of people just like Emily—is the ability to start her new year with a surge of new hope. The great news is that WE CAN DO IT! The gift of a financial donation will directly help us change the answer to that loaded question, and directly helps us achieve a new step towards our ultimate goal.
This week, with her birthday rapidly approaching, please consider helping us expedite our mission as we close out our annual campaign.
You may not believe it, but just 5 minutes of your time can have a huge impact for us, for Emily, and for everyone living with nonsense mutations of CF.
Take part in our #34for34 campaign and help me celebrate my best friend Emily’s 34th birthday with a gift that helps secure many more!
If you would prefer to prefer to donate directly on the website, please click here.