armpants
Moderator
Posts: 3,653 Likes: 12,633
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Post by armpants on Aug 15, 2017 3:34:53 GMT -6
You may or may not have seen that one of our member's daughter was recently diagnosed with Spinal Muscle Atrophy. It's a condition that be deadly, but has better results the earlier it is found. I'm linking a petition for New York to add SMA to the newborn screening panel. Please sign and share to help other families get the early care so desperately needed with this diagnosis.
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Post by Betweenthelines on Aug 15, 2017 3:58:16 GMT -6
Signed it yesterday
Thanks for sharing over here.
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jedi
Sapphire
Posts: 3,725 Likes: 4,560
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Post by jedi on Aug 15, 2017 5:36:22 GMT -6
I saw that when I was lurking GD. How sad. I have a friend who lost her niece to that. She was less than a year old. This was almost 6 years ago and I think they've made a lot of advancements too. I know another lady whose son, he's like 15 has it.
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Post by taketheshot on Aug 15, 2017 6:10:04 GMT -6
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Post by coconutbacon on Aug 15, 2017 8:05:17 GMT -6
Signing now. Thanks for sharing armpants. I saw the initial post on GD and it breaks my heart.
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shellyr
Gold
Posts: 679 Likes: 1,141
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Post by shellyr on Aug 15, 2017 22:06:30 GMT -6
I'm not a New Yorker, so I don't go here, but my cousin has SMA type 3. He's 30 now, which is rare. I had genetic testing before I was pregnant because it runs in my family. Thankfully I'm not a carrier.
I will keep this little girl and her family in my thoughts.
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