What’s the best that could happen?

By Jessica Rutstein Lazarus, PsyD, Emily’s Entourage board member and Emily’s lifelong best friend

Happy 40th Birthday, Em!

Happy New Year, everyone! And Happy birthday to Emily, the most inspiring, authentic, loyal, supportive best friend.

Birthdays—and especially milestone birthdays—are a big deal for everyone, but they are undoubtedly different for those of us who do not have a life-threatening illness. When I was young, 40 felt like a number far into the future, but I did not routinely fear that it was a number I may not reach. I certainly couldn’t imagine what it would feel like, or who I would feel like as a person, when that year arrived. Many of us forget to welcome the theme of gratitude each year as we celebrate a birthday, and that’s a selfish mistake, considering there are so many of our own friends and family members who are bursting with gratitude to be reaching another year of celebration.

Back in middle school when Emily and I were first solidifying our lifelong friendship, the life expectancy for someone with cystic fibrosis (CF) was only the early 30’s. Let that sink in for a moment. When our friendship started, there was actual scientific data indicating that I should fear whether Emily and I would ever get to celebrate this 40th milestone together. The odds were stacked against it.

Sure, at that young age we kept things mostly lighthearted, with classic middle school drama and social events such as sleepover parties and meet-ups at the local Starbucks. But, there were also IV poles at those sleepover parties, and dinners together in hospital rooms where we couldn’t escape the reality of CF. So you see, as Emily’s best friend, that fear has always been with me; during every birthday celebration, every single year since Emily first came into my life. That’s the thing about diseases like CF. Their impact extends far beyond the person with CF or even just their family. It infiltrates the thoughts, dreams, and fears of everyone who knows and loves someone with CF like I do.

Statistics and scientific data, however, didn’t see Emily coming. Because if you know Emily—if you’ve ever had a conversation, or listened to one of her impassioned speeches—then you know, above all else, she is someone who defies expectations.

Emily and Emily’s Entourage are perfect examples of what can happen when you decide to defy the statistics and challenge the status quo. Years ago, Emily decided that she wasn’t going to sit  by idly and let the existing research process and medical system dictate her future. We followed in her lead in pursuit of a better, longer future for Emily and everyone in the final 10% who deserves so much better.

EE is clearly showing us what’s the best that can happen when you’re willing to work against all odds; raising millions of dollars to fuel promising novel research, launching a gene therapy company that is now reaching people with CF in a clinical trial, being invited to the White House and earning national recognition, and directly awarding grants to the world’s brightest researchers, to only name a few of the immense accomplishments.

What if we had never tried? What if we had accepted the grim statistics? What if we had stopped at the daydreaming stage? I cannot even imagine.

If you have an idea, a goal, a mission, a passion you’ve been putting off pursuing, stop worrying about what could go wrong, and instead, think about what could go right.

And, think about what you stand to lose if you never give it a shot.  We spend so much time worrying about taking a step outside our comfort zone that we forget to even consider the flip side;that the result could defy our wildest expectations.

Now, against all odds, I can’t imagine a year in which Emily and I don’t ring in a new birthday year together. And I don’t want to ever have to.

So, right now, whether you’re finalizing your 2025 resolutions, or preparing for a milestone birthday this year (like me and Emily!), I encourage you to greet this fresh start, this next chapter, with a hopeful, inspired, grateful mindset. Let’s continue to work together tirelessly, to push forward, to rewrite the odds for hepsi of those with CF.

I urge you to ask yourself, what is the very best that could happen? 

In the meantime, let’s give Emily the BEST birthday she’s ever had by helping to make Emily’s single greatest wish come true—fast, lifesaving breakthroughs for 100% of the CF community with nobody left behind-by making a donation of $40 dollars for her 40th birthday.

.DONATE $40 FOR EMILY’S 40TH