Wednesday, August 14, 2019

#SMAStripes - SMA Awareness Month

At the end of last week, someone who I went to college with reached out to me on Facebook messenger. I wasn't close friends with her, so at first I wasn't sure why exactly she was messaging me... honestly, my first thought with any out-of-the-blue message is that they're trying to sell me something (LuLaRoe, essential oils, etc.). But actually, she was reaching out to me because she was pregnant, and just found out that her child had SMA.
I love that social media helps to connect this way. When I was growing up, it definitely wasn't this easy to find other families affected by SMA. Having a community is really, really important when you're affected in some way by a rare disease like SMA. There's no guarantee that your local doctor is going to be an expert, or even familiar with, SMA. You have to become your own expert, and that's so much easier to do when you can talk to other people going through the same things that you are.

The thing that really hit me, though, is how much has changed since my diagnosis. My experiences growing up with SMA are likely to be so, so different than someone who is diagnosed today. For one thing, more and more states are adding SMA to genetic testing panels, so people know if their child is affected by SMA when their baby is born, or sometimes even before. And that's important because of the treatments available now, which are more effective the younger they're given. There's even a 1-time gene therapy treatment approved for kids up to 2 years old - how amazing is that?

It makes me really hopeful for the future. There's currently an oral version of a drug in the research pipeline, which I'm crossing my fingers about. I'm glad that research and drug development is being done for all ages - adults with SMA have a much higher likelihood of easily accessing an oral drug rather than one injected through the spinal fluid.

August is SMA Awareness Month - I'd love for you all to join me in raising awareness  about SMA. The more people that have heard of it, the more chance the SMA community has of coming together, and the more chance that funding continues for the development of new drugs and treatments. Together in SMA has created a fun filter that you can use on social media during August - you can see my picture at the top of this post! It's easy to access - follow these steps:

1. Make sure you "Like" the Together in SMA page on Facebook.
2. On your phone, click either the "+" to add to your story, or click to add a photo to a new post.
3. When the camera pops up, click the 😊 and scroll through until you find the SMA Stripes one.
4. When you share your picture, make sure you hashtag it with #SMAStripes so everyone can find it!
5. Share away!

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