Jan 14, 2009 | EDITORIALS
By: IPA posted on: January 14, 2009 Since the first market approval of Myozyme, the IPA has liaised directly with Genzyme LSD Therapeutics to insist that an adequate inventory of the product was kept to ensure continuous supply to all patients receiving the treatment;...
Nov 14, 2006 | EDITORIALS
By: Mariana Pisano posted on: November 14, 2006 (Published to web on November 14, 2006) Pompe disease, a rare, devastating and often fatal genetic disorder, is the subject of a major conference to be held Friday through Sunday at the Holiday Inn Riverwalk. To read...
Sep 19, 2006 | EDITORIALS
By: Marylyn House posted on: September 19, 2006 Dear All, I admit that I was wrong in my previous analysis of “The Cure:” an analysis which was based on summaries and reviews I found at Amazon.com. In fact, I must say that I was unexpectedly surprised while reading...
May 13, 2005 | EDITORIALS
By: A. Dorsett posted on: May 13, 2005 (Originally published May 13, 2005) By doctor’s estimates, Tiffany House shouldn’t be alive today, more than 10 years after she was diagnosed with a rare, disabling genetic disease that robs its victims of muscle strength and,...
Mar 21, 2005 | EDITORIALS
By: By Richard Jerome. Macon Morehouse in San Antonio. posted on: March 21, 2005 Doctors Said Tiffany House Wouldn’t Live Past 20, but Her Parents Refused to Accept That Death Sentence (Published in People Magazine: March 21, 2005) When Randall and Marylyn House...
Mar 28, 2003 | EDITORIALS
By: Marylyn House posted on: March 28, 2003 The following correspondence is in response to the Pompe disease research article that was published in the March 2003 issue of “Quest” an MDA publication. It includes emails sent over the GSDnet during February-March 2003,...
Sep 24, 2001 | EDITORIALS
By: M. Pisano posted on: September 24, 2001 (originally published in San Antonio Express-News on Sept. 24, 2001) When Tiffany House was growing up, she was often sick. But in that resilient way that children adapt to their bodies and their immediate world, she thought...
