Post by Molly Lannon on Oct 2, 2014 21:52:19 GMT -5
It is hard to believe it has already been ten years to this date that I was walking through the halls of St. Mary’s Hospital as a patient of a spinal fusion surgery. Over the past decade, after facing issues with my spine throughout my childhood, a nonprofit organization, FightSMA is one that I can really relate to. SMA stands for spinal muscular atrophy, and it is the shrinking of the muscles around the spine, leading to weakness, spinal deformities, and even paralysis. To spread the word about SMA, the organization uses many social media platforms to engage its audience, and help raise donations to support the fight against the heartbreaking disease that genetically affects so many children.
On their YouTube channel, Fight SMA includes many videos and interviews with doctors and other medical professionals from their annual research conference. Another aspect of their YouTube channel is to provide personal videos that parents have made and shared of their children who suffer with spinal muscular atrophy, to show their struggle, and how they are coping with the disease. The videos on YouTube are organized by different topics regarding SMA, and include everything from childhood bone development, pediatric nutrition, and even how to deal with sleep issues caused by the discomfort of spinal muscular atrophy. Although this week we have learned about social media in regards to Instagram, YouTube, Tumblr, and Vine, FightSMA.org has even created their own social media platform called SMA Space. The website serves as a forum where users can join and create a profile page, and connect with other users who have, or are parents of children affected by spinal muscular atrophy. The forum also features games and links on education about the disease, and I thought this was a really neat aspect to their social media campaign, and a good way for users to connect with each other in a more private way than a larger platform like Facebook or Twitter. Not only does the organization use YouTube to spread their message, they Instagram pictures of many of their supporters as well as encouraging messages to children who may be fighting SMA.
One of SMA’s most successful fundraisers each year is also one that I can really relate to. The lead guitarist of the band, Widespread Panic,( one of my favorites)is the Godfather to a girl named Hannah, who suffers from spinal muscular atrophy. Every year, in Orlando, Florida, a charity golf tournament and slew of concerts is put on to benefit the FightSMA organization. The event is called Hannah’s Buddies, and has been a success for the past fourteen years. Often, the concerts are re-broadcast on YouTube, and really show how the involvement of popular musicians can raise awareness for a good cause, or even a cause many do not know exists.
www.fightsma.org/blog/sma-events/images-from-the-13th-annual-hannahs-buddies-charity-classic/
www.youtube.com/user/fightsmavideo
www.smaspace.com/
On their YouTube channel, Fight SMA includes many videos and interviews with doctors and other medical professionals from their annual research conference. Another aspect of their YouTube channel is to provide personal videos that parents have made and shared of their children who suffer with spinal muscular atrophy, to show their struggle, and how they are coping with the disease. The videos on YouTube are organized by different topics regarding SMA, and include everything from childhood bone development, pediatric nutrition, and even how to deal with sleep issues caused by the discomfort of spinal muscular atrophy. Although this week we have learned about social media in regards to Instagram, YouTube, Tumblr, and Vine, FightSMA.org has even created their own social media platform called SMA Space. The website serves as a forum where users can join and create a profile page, and connect with other users who have, or are parents of children affected by spinal muscular atrophy. The forum also features games and links on education about the disease, and I thought this was a really neat aspect to their social media campaign, and a good way for users to connect with each other in a more private way than a larger platform like Facebook or Twitter. Not only does the organization use YouTube to spread their message, they Instagram pictures of many of their supporters as well as encouraging messages to children who may be fighting SMA.
One of SMA’s most successful fundraisers each year is also one that I can really relate to. The lead guitarist of the band, Widespread Panic,( one of my favorites)is the Godfather to a girl named Hannah, who suffers from spinal muscular atrophy. Every year, in Orlando, Florida, a charity golf tournament and slew of concerts is put on to benefit the FightSMA organization. The event is called Hannah’s Buddies, and has been a success for the past fourteen years. Often, the concerts are re-broadcast on YouTube, and really show how the involvement of popular musicians can raise awareness for a good cause, or even a cause many do not know exists.
www.fightsma.org/blog/sma-events/images-from-the-13th-annual-hannahs-buddies-charity-classic/
www.youtube.com/user/fightsmavideo
www.smaspace.com/