Rare Disease Report

Traditional Fundraising is Dead. Social Media Wins the Day.

JUNE 24, 2015
It’s funny how when you’re very focused and steeped in a perspective, you think that everyone around you shares it. That’s kind of how I am about social media. I have multiple accounts on Facebook, Twitter, Instagram, and YouTube, adding to that Pinterest, Vine, Google+, and the new and ever-so-cool Periscope.
While I would (correctly) argue that rare disease families are the power users of the internet, I fully acknowledge that I might be in a little deeper than most.
But because of the distance than spans between patients in a single rare disease community, not to mention the often significant time and effort it takes to be or care for someone with a rare disease, in order for us to stay connected at all, social media is generally a requirement.
So naturally, we turn to what we know best for our awareness and fundraising efforts. Not only that, many of us are much more likely to click on a video to watch it and share it than we are to participate in a walk, solicit sponsors, or organize a charity bar-b-que.
So is traditional nonprofit fundraising dead? Can we all pack it in, stay in our pajamas and simply raise funds and awareness about our rare disease from the comfort of our couch?
Well, maybe.
Traditional fundraising IS dead. The way we find donors, engage donors, retain donors, and share facts and insights about our disease has been forever changed by social media.
Social media is often the first thing people do when they open their eyes and the last thing before they close them.
ProjectAlive.orgThink about that.
You want to be people’s first and last thing.
So when our foundation, Saving Case & Friends – a Hunter Syndrome research foundation, decided on our inaugural awareness and fundraising effort, we naturally gravitated toward a social media based campaign. A visual campaign. A compelling campaign that people would want to share and participate in.

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