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Rare Disease Day is HERE!

It’s a rare day! Rare Disease Day, that is. What is Rare Disease Day? More than 600 patient organizations, government agencies, educational institutions, clinical centers, and companies have signed on as Rare Disease Day Partners in the U.S., which means they support the global theme and goals of Rare Disease Day. My Taylor has one…

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A Parenting Dream

Contributing at RooMag.com today! Woohoo! So here’s your teaser; sure hope you’ll stop by there and continue reading.   For many mothers, a dream ignites at the first moment of acknowledgment that a tiny little human being is growing inside the womb. After nine months of nurturing, the dream of holding a precious baby in your…

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A Special Thank You

“Purplicious Courage”, the annual Ohio MPS (mucopolysaccharidoses) Family Gathering, was held Sat., July 9. 2011, from 12-4pm.  16 families with children affected by MPS and ML disorders came from Indiana, Wisconsin, New York, Tennessee and Ohio to celebrate the children and encourage one another.  Northwest Bible Church in Hilliard, OH graciously served as the facility…

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Purplicious Courage

The sea of purple boxes and bags  that filled my dining room has diminished significantly since yesterday has passed.  But our hearts are full and overflowing because our family had the privilege of hosting the Annual Ohio MPS Family Gathering for the 10th time.  Purple has always been Taylor’s favorite color and so this year,…