Saturday, August 12 will be the annual SMA International Candle Lighting. You can click on the hyperlink above (I think!) to see the Facebook event. The details are below.
August is SMA Awareness Month, and we choose the second Saturday in August to reflect on those who have lost their battle with Spinal Muscular Atrophy (SMA) and honor those living with SMA. We hope to spread awareness and unity to the families living with it as we all join spreading the light of our candles around the world on Facebook.
Join us by lighting a candle at 8pm (your time zone) @sunset on Saturday, August 12, 2023. Take a photo and post on this event page. #SMAawareness #cureSMA
To learn more about SMA go to www. curesma.org
Please share with everyone you know to light up Facebook on Saturday, Aug. 12 @ 8pm from wherever you are.
We do this every year as a family. Sometimes we’re inside. Sometimes we’ll go outside. It’s always a little different for us each year. There are some families and communities that go big with this! The Reeds in Ohio host a big event and they’ve been streaming it so we usually tune in. Some SMA families attend and also some of the docs and researchers at Nationwide Hospital. They do a beautiful job.
It’s a weird thing to wish for, but I wish there were more families around here that would be invested in hosting/attending some events like this. It feels kinda isolating here sometimes. We haven’t found anyone that’s really like Casey in school, the Howard program or from seeing people around town. Sigh. What I mean is we haven’t found anyone with a diagnosis in which the person is similar to Casey in that they use a wheel chair, are trached, non speaking, and uses a communication device…
Here are some pics from last years. The 2014 montage is the last candle lighting with Collie. 💙💔
I look forward to this every year! Such a beautiful way to honor all of the warriors and angels💗 it's kind of the same, isolation wise, here. Wouldn't it be awesome if we could all live closer??
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