August is recognized as Spinal Muscular Atrophy Awareness Month. The goal of this event is to help spread information about this rare disorder among the general public and the broader medical community. The awareness month also places a spotlight on fundraising and other advocacy efforts dedicated to the spinal muscular atrophy community. This event is organized by the patient community organization Cure SMA; there are a wide variety of ways that you can get involved in spreading awareness about this rare genetic disorder, so keep reading to learn more.
About Spinal Muscular Atrophy
Spinal muscular atrophy is a type of neuromuscular disorder in which the motor neurons are destroyed, leading to muscle wasting. Without prompt treatment, the disease is lethal in many cases. This disorder is linked to genetic defects of the SMN1 gene. This gene encodes a protein called SMN, and when not present in certain amounts, neurons are unable to function. There are different kinds of spinal muscular atrophy that are categorized by when symptoms first appear. These symptoms may include loss of reflexes, muscle weakness and poor muscle tone, problems with feeding and swallowing, developmental delays, respiratory muscle weakness, tongue twitching, and a bell shaped torso. The most effective treatment currently available for the disease is called Zolgensma. To learn more about spinal muscular atrophy, click here.
Candle Lighting
An annual tradition of this event is to organize group lightings of candles as a way to honor the victims of this genetic disorder. This year’s event is scheduled for August 8th. Due to the pandemic, gathering in groups for the lighting is not recommended, but you can send photos of your lit candle to the Facebook community album.
Social Media
Social media is an effective and easy method for spreading awareness. You can get the Cure SMA Facebook profile frame here.
You can also submit relevant images to the SMA Awareness Month Community Album on Facebook.
There are also several graphics that can be shared:
Don’t forget to use the hashtags #SMAAwarenessMonth and #CureSMA.
Stay informed by following Cure SMA on Twitter, Facebook, and Instagram.
Tell Your Story
Have you been impacted by spinal muscular atrophy? Now is the time to share your story. Talk about your experiences on social media, read and share Cure SMA’s Community Spotlight, and submit your story to [email protected].
Looking for more ways to get involved? Click here to learn more.
