Posts tagged with video

Speaking of the Orphan Drug Market….

Posted Monday September 29, 2014 by Melissa

Sometimes I like to think that we’re making progress in the rare...

Sometimes I like to think that we’re making progress in the rare disease community. The “we” being the collective we  – the interconnected and interdependent rare disease community that involves...

Read More »
Melissa at 2011 MPS Family Conference

A Christmas Lullaby

Posted Saturday December 24, 2011 by Melissa

Lullabies are normally a wonderful part of having a baby or even...

Lullabies are normally a wonderful part of having a baby or even young children. There are a multitude of beautiful songs to sing your child, but sometimes you never consider...

Read More »
Merry Christmas from the Hogans

Games and Puzzles

Posted Wednesday April 27, 2011 by Melissa

Not too many parents are excited when their child is enamored by...

Not too many parents are excited when their child is enamored by a video game, but I was jumping for joy today. I wasn’t sure what to expect when Case...

Read More »
Case playing video game

Case’s Elaprase Treatment

Posted Saturday April 02, 2011 by Melissa

Every Thursday since July 2009, Case has traveled to Vanderbilt Children’s Hospital...

Every Thursday since July 2009, Case has traveled to Vanderbilt Children’s Hospital to receive an infusion of a drug called Elaprase. So, by now, Case has had approximately 80 infusions...

Read More »
Hospital bed sleeping

Recreation Therapy, Case style

Posted Thursday March 31, 2011 by Melissa

Being in a hospital for many days each month is almost enough...

Being in a hospital for many days each month is almost enough to drive a child (or his mother) crazy, right? Especially when that child has issues with hyperactivity, attention...

Read More »
Recreation Therapy

The Reality of Hunter Syndrome

Posted Friday March 25, 2011 by Melissa

Sometimes reading about MPS is not enough. As a friend would say,...

Sometimes reading about MPS is not enough. As a friend would say, sometimes it is little black words on a little white page. Without the living reality, it is often...

Read More »
Reality of Hunter Syndrome