The entirety of August is dedicated to informing the world about this rare disease and celebrating awesome individuals who have some connection to it. The SMA community devotes time throughout the month for sharing facts about SMA, telling their personal stories, hosting fundraisers, and participating in ceremonial candle lightings in honor of those who are affected by SMA and in memory of those who have passed away.
One of my favorite SMA Awareness Month events is 31 Days of SMA, an initiative organized by SMA News Today and designed to tell the stories of a wide range of people who are impacted by the disease. One story is shared each day. So far, topics have covered travel, college, dating, dog training, raising a child with SMA, and more. I’ve greatly enjoyed reading about everyone’s unique adventures.
This year, we also have some exciting news to celebrate during SMA Awareness Month. On August 7, the U.S. Food and Drug Administration announced their approval of Evrysdi (risdiplam) for treating SMA patients. This is now the third available SMA treatment option and the first one that is administered orally or through a feeding tube.
It seems fitting that this long-awaited news was delivered during such an important time of the year. In the past, I’ve written about my personal journey toward treating SMA, and I’m hopeful that I will be able to share new developments in that journey soon.
If you’re friends with an SMA family, you may have seen much of this information proudly plastered across our social media pages for the past few weeks. It’s a trend that is likely to continue until the end of the month. But what happens after that? SMA Awareness Month will come to end, but that doesn’t mean we will stop trying to raise awareness until next August. We’ll keep sharing our stories and bringing attention to this disease.
For many of us, every day is an opportunity to raise awareness. SMA is a constant part of our lives, and that won’t change at midnight on August 31. I’m going to continue sharing. I’m going to continue offering glimpses into my life to everyone I meet. I’m going to continue writing about my perspective on life through the SMA lens. Because raising awareness is never limited to one month of the year.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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