SMAS Awareness Day
- SMASRAS
- Jan 29, 2017
- 1 min read
Yesterday, Jan 28, was the 8th Annual SMAS Awareness Day (Purple Day). My mom and I were fortunate enough to have our first Dallas/Fort Worth Warriors Meeting. My mom along with three others fighting SMAS met up. We all had a wonderful time and a few of us even went to get our ears pierced in hopes of it assisting our migraines. Flyers were printed off and a few handed out. I plan on handing more out today.
I’d like to personally thank Anthony DiMaso for donating his time to make the SMAS Awareness video. I’ll try and have him upload it to the site later today. If you’d like your photo or a video clip in next year’s video please send it to smasvoices@gmail.com We plan on having the cut off for next year’s video be Oct 31, 2017. This will allow for plenty of editing.
To anyone that has media connections I ask that you share the video with them. Please remember that GARD estimates 41,000-96,000 Americans suffer from SMAS. The 400 number is OLD!!! 🙂
For now….here is the youtube link https://youtu.be/qSiYInnQbTw
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Bạn nào ở Bắc Ninh nên thử xem dự báo thời tiết Bắc Ninh trên trang này, đặc biệt là phần dự báo theo khu vực phường, xã. Thông tin sát thực tế nên rất hữu ích cho người di chuyển nhiều, giúp chủ động hơn trong mọi kế hoạch trong ngày.
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Beautifully written, sharing this! My best friend was diagnosed with SMAS, and watching her deal with the severe weight loss and pain is just heartbreaking. Whenever I'm at the hospital accompanying her during her long appointments, there’s a lot of waiting around. While she’s resting, I usually just sit quietly and play some free casual games on minigame on my phone to pass the time and decompress. Rare disease patients deserve so much more visibility and research!