Pompe in the News: What Happened to the Truth?

Feb 28, 2017 | EDITORIALS

By: Tiffany House–AMDA President posted on: March 03, 2017   On February 28, 2017—Rare Disease Day—Pompe disease was once again the subject of national media attention. During his Joint Address to Congress, President Trump brought national attention to patients...

In Memoriam: Helen Walker

Jul 22, 2013 | EDITORIALS

By: Tiffany House posted on: July 22, 2013 On November 30, 2012 the Pompe Community lost one of its most valued Advocates: Helen Walker.  Helen was the President of the Australian Pompe Association (APA) and a Board Member of the International Pompe Association.  She...

Pompe Disease—By a Pompe Patient

Dec 1, 2009 | EDITORIALS

By Dawn Harris Kendall posted on: December 01, 2009 Living with Pompe Elizabeth Nunnery takes her infant daughter, Zoe, to the hospital at 8:30 in the morning.  A nurse verifies Zoe’s medical information and hooks Zoe up to machines monitoring her blood oxygen level,...

Changing Lives—UTSA Sombrilla

Jul 20, 2009 | EDITORIALS

By: Jason B. Johnson posted on: July 20, 2009 Published in University of Texas San Antonio’s Sombrilla Magazine: Summer 2009 Tiffany House was just 11 when she was diagnosed with a rare and often fatal disease called Acid Maltase Deficiency. Doctors told her she...

IPA Statement: The End Of Myozyme Supply Restrictions

May 8, 2009 | EDITORIALS

By: IPA posted on: May 08, 2009 Dear IPA Affiliate, You will no doubt have heard the wonderful news that Myozyme from the Belgian production facility has been approved for patients within the European Community (see the IPA website for the press release). Another...

AMDA Letter to Patients Regarding Supply Situation

Jan 17, 2009 | EDITORIALS

By: Tiffany House–AMDA President posted on: January 17, 2009 The AMDA is writing to our Pompe patient community to let everyone know that the AMDA has been working closely with the IPA and Genzyme in order to get communication out to our patient population about...