June 9, 2021
by marfmom
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Today I’m not ok. Today our community is grieving. Today 3 families are devastated. On the 1st, I learned of the passing of my friend Steve, from Covid-19. He had Marfan, and we became acquainted online when he asked me … Continue reading
December 22, 2014
by marfmom
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It’s that time of year! You’re looking for last minute gifts for the Marf in your life, and you’re stumped. Never fear! My (mostly!) annual gift guide is here! Let’s get crackin’! Mobility: Britax B-Agile Stephanie found the B-Agile stroller … Continue reading
February 20, 2014
by marfmom
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My fried Jennie asked me to help spread the word about her upcoming fundraiser, Cross the Finish Line for Caroline. Jennie’s daughter, Caroline, has Loeys-Dietz syndrome (a sort of genetic “cousin” to Marfan syndrome). In its 3rd year, this is … Continue reading