August has begun and you know what that means – it is Spinal Muscular Atrophy (SMA) Awareness Month! During this month, many patients, advocacy groups, family members, and others work not just to raise awareness of SMA – but to highlight the needs and experiences of those within this community.
Want to learn how you can get involved in raising awareness? Read below – or check out the amazing resources from Cure SMA!
About Spinal Muscular Atrophy (SMA)
Spinal muscular atrophy (SMA) is a rare genetic neuromuscular disorder which causes mild to severe muscle weakness and degeneration. There are multiple subtypes of SMA. In many cases, SMN1 gene mutations cause this disorder. These mutations cause the loss of motor neurons in the spinal cord and brain. As a result, muscles become weak and atrophied. Some individuals with SMA may have rarer forms based on other chromosomal mutations.
Forms of SMA include Werdnig-Hoffman disease (type I), a severe form diagnosed at or soon after birth. This form causes developmental delays, difficulties with breathing and swallowing, and an inability to sit or hold the head independently. Alternately, those with Kugelberg-Welander syndrome (type III) often see symptoms manifest in early childhood or adolescence, such as progressive difficulty with walking.
You can learn more about the different types of SMA – and their symptoms – here.
Raising Spinal Muscular Atrophy Awareness Throughout August
So you want to get involved in raising SMA awareness this month – but aren’t sure where to start. Here are some actionable ways to get involved and make meaningful impact:
- Research. One of the best ways to learn about SMA is to do some research on your own through reputable sources and advocacy groups, as well as to learn from patients! Checking out the resources on NORD or Cure SMA is a good place to start – and then branch out from there.
- Listen. Head to social media and look for the #SMAAwarenessMonth hashtag. During this month, many people will be sharing their stories about and experiences with spinal muscular atrophy. Like, comment, and engage with these to help raise awareness. And if you want to share your own social media content, Cure SMA has some great social media graphics that you can use.
- Tell your story. Do you or a loved one have SMA? Consider sharing your story – either on social media or through a group. At Patient Worthy, we would be happy to share your story. Feel free to submit your story here or email us so we can set you up with one of our writers.
- Donate. Donating to organizations like Cure SMA or other advocacy groups can help fund and drive research which is working to find treatments and cures for this condition.
- Be an advocate. You can sign up for Cure SMA’s Action Center to learn about different advocacy opportunities.
- Light a candle – or check out an Awareness Lighting event. If you do decide to light a candle, please do so on August 13th at sunset. This is to honor those who have lost their lives and to remember their impact on this community.
Do you have other ideas to raise awareness? Tweet at us at @patientworthy to let us know!
