Let's All Harness the Power of Social Media in the Fight Against ALS

by Augie Nieto on Sun, 2011-05-01 15:08
Article Highlights:
  • MDA ALS Division Co-Chair Augie Nieto uses social media to spread the word about ALS, make connections with prospective donors, and build awareness about raising money for ALS research.
  • Nieto says that social networking has afforded him the opportunity to share his life with friends and followers, and he's been able to connect with people worldwide to offer advice on coping and living with ALS.

Consider these statistics:

  • Four out of five businesses with over 100 employees have Twitter accounts.
  • Sixty-one percent of consumers say they use social media to learn about products/features or services.
  • Twitter reaches 76 million people a month.
  • Facebook has more than 600 million users.
  • The average Facebook user spends more than five hours on the site each month.
MDA ALS Division Co-Chair Augie Nieto keeps in touch with the world thanks to his foot switches (above) and his strong desire to spread the word about ALS.

With numbers like these, it’s hard to ignore the power of social media. All of the organizations with which I’m involved — including MDA, the ALS Therapy Development Institute, Octane Fitness, DynaVox (communication devices) and Quest Software — use social media as an outreach tool and to drive traffic to their websites, increase brand recognition, improve customer service, and help them communicate and respond to their members.

For people with ALS, social networking is equally as powerful, but means something different.

ALS can be a very isolating disease. For so many of us, spending countless hours each day typing on a computer (sometimes with our toes, like me) is the only way we can communicate. I use a communication device to conduct board meetings and conference calls, hold daily meetings from my home office, connect with other ALS patients and, most importantly, tell my family I love them.

Social networking enables people with ALS to stay connected with friends and family in ways that weren’t possible before the social media revolution. In addition, it allows us to spread the word about this little-known disease, and rally support to find a cure.

After receiving my ALS diagnosis in 2005, I made it my life’s mission to find a cure for ALS. In the last year, Facebook and Twitter have become valuable tools to make connections with prospective donors, meet and interact with others in the ALS community, and build awareness about ALS research and advocacy.

Through social networking, I am able to share my life with my friends and followers. I can pass along the most recent research accomplishments, up to the minute. I can announce fundraising totals and different ways people can help us reach our fundraising goals. Most importantly, I can connect with people worldwide to offer advice on coping and living with ALS.

Recently, Facebook founder Mark Zuckerberg met with some people with ALS. When Mark founded Facebook, do you think he ever thought about the difference he would make to people with ALS or similar diseases or disabilities? I wonder if he fully understands how he has changed the lives of those of us in the ALS community.

I believe the ability to communicate gives me a reason to keep on living. My social networking focuses on three main areas:

  1. Fundraising. MDA’s Augie’s Quest has raised more than $28 million to date for ALS research.
  2. Research. MDA is funding the ALS Therapy Development Institute, the world’s largest ALS laboratory.
  3. Communication. In the past six months I’ve been able to increase my followers on Facebook and Twitter by more than 150 percent. It’s my hope to continue to grow my presence on these social networks in an effort to help as many people with ALS as possible.

Imagine the possibilities if we’re able to educate the ALS community in real time about the unprecedented research progress we’re making in the lab; keep donors engaged so that they keep giving to make this progress possible; and continue to give ALS families around the world HOPE. Hope that a cure isn’t far away, but instead is right around the “social networking” corner.

You can help! Follow me on Twitter and Facebook.

Augie and Lynne Nieto, of Corona del Mar, Calif., are the national co-chairs of the MDA ALS Division. Augie was co-founder and former president of Life Fitness, and is now chairman of Octane Fitness.

MDA provides a variety of social media outlets, all with the goal of “offering our followers quick and easy information about our efforts and engaging our community through feedback and direct messages,” according to MDA President & CEO Gerald C. Weinberg.

myMDA — This site provides individuals with muscle diseases, their families, friends and caregivers with a place to share experiences, exchange helpful tips and resources, and cultivate new friendships.

MDA Facebook page — “Like” the site to keep abreast of happenings in the MDA community.

Twitter — Followers get instant updates on the latest news about MDA research and services; MDA advocacy action alerts; and links to MDA’s Facebook and YouTube sites.

YouTube — Find a catalog of videos by and about individuals with muscle diseases, and about MDA’s research and services programs.

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