Hey everyone! Just wanted to reach out and let you know Rare Disease Day is THIS Saturday. If you would like to participate in the BioNews initiative to raise awareness for our rare diseases, please submit a written submission or video that includes:
Where you’re from
How you celebrate what makes you rare
Submissions can be sent to [email protected]. (Use #WhatMakesMeRareSMA as the subject line.) I’ve included my submission below, and you can check out some more examples on our Instagram page here. Hope you’ll join us
“Hi, friends of BioNews! My name is Alyssa, and I am 29 years old living with SMA type I. My doctors affectionately refer to me and my rare disease as their spotted zebra which, I think, is flattering. Living with SMA, being rare is all I’ve ever known. But, it’s also what makes me ME. I celebrate my rare disease by embracing who I am— the good, the challenging, and the beautiful mess— for it has played an integral role in the becoming of who I am today. And, in learning to embrace the things that make me rare, I learn to live in my truest potential. Just as I am. Right where I am. To me, that’s something worth celebrating.”
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FDA Approves ZOLGENSMA for SMA! Talk about it now — click below:
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