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World Rare Disease Day and the Global Genes Project
World Rare Disease Day is this coming Sunday, February 28. Please join the Global Genes Project and people all over the world by wearing jeans this Friday to show your support! The Global Genes...
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2013: The Memories
As the sun sets on 2013, our seventh full year fighting the war against Batten disease, I know in my heart that in many ways, the story has just begun. On Jan. 4, we remembered my Grandma Kathryn, an...
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Running for Taylor in 50 States: World Rare Disease Day
When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister,...
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Running for Taylor in 50 States: Texas’ Woodlands Half Marathon
When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister,...
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