Social Media Revolution and the #NHF11 Army

Revolution. The word just sounds awesome. Much more inspiring than reform. No, I don't want to be a reformist. I want to be a revolutionary. Not just because it sounds better, but because revolution is abrupt and drastic change, while reform is a slow and gradual process. My children have hemophilia. I believe a cure is more than possible. It is likely. Why would I want the discovery of such to be a slow and gradual process? I want revolution. Social media revolution.

Last year I made a commitment to connect with others in the hemophilia community through social media... mainly Twitter. I have listened to and engaged with complete strangers across the globe. We have an affinity to one another because we are somehow affected by hemophilia, or some other bleeding disorder. For months, I have been anxiously awaiting the opportunity to meet many of my new friends at the National Hemophilia Foundation's 2011 Annual Meeting (#NHF11). As the date approached, I decided to organize a social event to facilitate such a meeting. I called it #SocialInfusion and promoted it through social media (Twitter, Facebook and Google+). We even found a great supporter to sponsor the event. Thanks Accurate Rx.

The significance of this event transcends relationships. For those of us who met face-to-face in a dark, loud pub in the River North neighborhood of Chicago, we expressed our willingness to act upon our beliefs, not just talk about them. The turnout was great, but it wasn't the quantity of people that made the event special. It was the quality. Passionate. Brilliant. Benevolent. Humble. Charismatic. Humorous. We were thinkers, but also doers. Everyone wanted to meet in real life and we acted upon our desires. If we were committed enough to do so prior to meeting face-to-face, how much more committed to a common purpose will we be now?

Many of us were tweeting information from various educational sessions at #NHF11 and many more were reading those tweets. We made a difference to those who were unable to travel to Chicago and attend themselves. Some even made a commitment to meet in DC for Washington Days in February. We're not simply saying hello on Twitter anymore. We are travelling hundreds of miles to meet in numbers and advocate for our community together.

One of the key revolutionaries who helped to connect the Twitter hemophilia community, Beth Marshall, could not make the trip to Chicago because she broke her knee. We truly missed her at #SocialInfusion. Although she wasn't with us in Chicago, she engaged with us through Twitter and once referred to us as the #NHF11 Army. I don't know about you, but I like to think of myself as a badass. A warrior. I fight for my children, for my friends and for the social media revolution which gives us the power to effect change. According to a Ning study, "it only takes 20 people to bring an online community to a significant level of activity and connectivity." The #NHF11 Army is already much stronger than that. Be a badass. Sign up and follow @NHF_Hemophilia or @marktkenny to get connected.

Why Nonprofits Need Social Media

As an advocate for the hemophilia community, I have a great appreciation for social media and what it can do for nonprofits. Let me begin by establishing that I am specifically talking about community-based nonprofits who exist for the purposes of educating and advocating on behalf of individuals and families affected by medical disorders.

The problem I see most within the hemophilia community is that local associations, and even national ones, seem to be disconnected from the communities they serve. They have newsletters and websites that connect us, but only the National Hemophilia Foundation and Hemophilia Society of Colorado seem to use social media strategy and planning to connect with their communities. Most others have merely created a Facebook page and/or Twitter account, but have no strategy or plan in place. Some have not even made it that far. Regardless of what stage each organization may be at, all must embrace social media if they plan to exist in five years.

Resources are limited, especially in today's weak economy. Many nonprofits are requesting funds from individuals and organizations who receive proposals and requests from several charities. Competition is fierce and those donating will have to make hard decisions. These decisions will likely include the following questions:

Why does this organization exist and who do they serve?


How do they serve this community and how will my funds serve an individual or family?


Are they making the most of each dollar or are they squandering them on unnecessary events?


In order to compete, nonprofits must be able to show that they know and understand the needs of their community, that they can provide products and services designed to help with those needs, and that they have a sustainable plan to do so.

I believe many nonprofits, including my local association, are disconnected from the communities they serve. They do not know or understand the needs of these communities. This is the foundation for failure. For example, if I need a helmet, but you make me a knee pad, that will not help me with what I need. Sure, I may be able to use a knee pad, but what I really need is a helmet. Nonprofits can easily use social media to listen to their communities, to discover what they need and respond with appropriate products and services. Please stop using outdated traditional models to communicate and interact with members.

Philip Bloom on Social Media