A rare opportunity to make a difference


By Alexandra Daley, SVP, Account Director

I ask: Is it possible to simultaneously connect, engage, and rally 1 billion people worldwide around a single cause, and raise money to boot? 

I know the answer is yes, and I’m confident that many heads are nodding in agreement, as most of you believe it’s possible too. In fact, it seems like any social, digital, real-time/web-based engagement, or relationship would be possible today. Connectivity through texting, streaming, posting, and gaming have become second-nature to many of us, baby boomers included. Of course, with millennials and Gen-Xers, it goes without saying, they’d be the first to stand up and declare the possibility. After all, they were practically born with a cell phone in their hand (well, almost)!  

Now that we agree it’s possible, I ask my second question: Do you know that it’s estimated, nearly 1 out of every 15 people in the world are affected by a “rare disease?” That’s 400 million people worldwide–about 25-30 million individuals here in the United States suffer from a rare disease. (That’s 1 in 10 Americans!). These individuals and their caregivers tirelessly fight to find treatment options, clinical trials to participate in, and yes, they are still hopeful for finding a cure! How is it that approximately 7,000 different rare diseases exist, the majority without viable treatment? Merely 5% have treatment options. Furthermore, unfortunately, nearly all of these complicated, rare diseases are life-threatening. 

Yes, life-threatening. Without help these children, teens, and adults will die from their affliction. Any preventable death is inexcusable. Suffering from a rare disease today, is as dreadful and horrific as the famine suffered by millions of Africans in 1985. Yet, back in July of 1985, over 30 years ago, we witnessed a phenomenal world event-Live Aid.  This herculean event was conceived and developed by one individual’s vision and passion: end the famine!

By today’s standards, Live Aid was a technologically unsophisticated event, yet it achieved monumental results from ordinary people like you and me joining together.

As you know, Live Aid was the first-ever global rock concert. Musicians in the UK and USA performed live, simultaneous concerts that were broadcasted across 125 nations through satellite link-ups. Here in the U.S., we witnessed the event broadcast on local stations, or by cable’s MTV, through our television sets. Laptops, iPads, mobile phones, and the public internet were nonexistent. And yet, over 1 billion people connected, engaged, and mobilized around a single cause: to end the famine in Africa. This event raised over $125 million. In 1985!!! Imagine what we could do today; how we could leverage the digital world and all of its abundant glory, to round up individuals, organizations, and healthcare companies to support and drive a united outreach and rally for new medicines to treat rare diseases. 

It’s been over 30 years since Live Aid. I cannot think of another global event of this magnitude. Bob Geldorf’s vision and passion, coupled with caring and unselfish citizens, truly demonstrated a triumph of technology and the human spirit! As the concert closed in the wee hours of July 13th, millions of people were listening:

We are the world. We are the children, we are the ones who make a brighter day, so let's start giving. There's a choice we're making…”

So now with a fuller understanding of the possibilities accentuated by a moment in history, I ask my final question: Who is going to make the choice, however grand or small, to advocate, support, and amplify the need for treatment options for the estimated 400 million individuals suffering from rare diseases? Will it be you?

#showyoucare, #showyourrare, #rarediseaseday2019