Stephanie Caffrey
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Tomorrow is #RareDiseaseDay I'm going to wear stripes to show my support for my nephew with Ta-Sachs Disease. Will you, #ShowYourStripes ? If, so who for? And if you want to wear stripes to show your support for my nephew, please tag me, so I can share with my sister.
10:51 PM - Feb 27, 2023
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Mary ♿ Cairns
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In response to Stephanie Caffrey.
Several people in my family, including me, have Charcot-Marie Tooth Disease or CMT. It's part of the Muscular Dystrophy family.
Funny story, when I was a cashier at Walmart 2 nurses from a research facility in TX were talking about study they were doing. Using the records of 1 family from 2 state
10:59 PM - Feb 27, 2023
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Mary ♿ Cairns
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states they realized CMT was in the Muscular Dystrophy family. They were shocked when I told them that was my family. They didn't have our names. They knew our genders and relationship to each other. My whole line got involved in the discussion.
In response to Mary ♿ Cairns.
11:02 PM - Feb 27, 2023
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Stephanie Caffrey
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In response to Mary ♿ Cairns.
That's actually really cool!
11:27 PM - Feb 27, 2023
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