By: Marylyn House posted on: September 02, 2006

(this response was written based on an expert found on and an article in the Wall Street Journal)

Dear All,

The following excerpt from Geeta Anand’s “story” on John Crowley can be found in the “Marketplace” section of the Wall Street Journal (Aug. 30, 2006):

A scientist with Neose Technologies initially (in 2000) exclaimed, “This is bull—-” in regard to Dr. Canfield’s initial endeavors with ERT

This same description of the Novazyme enzyme was repeated to me (at a Pompe conference) several years later.  S@#!T was the word that one of the foremost scientific authorities on Pompe disease used to describe the Novazyme product!

BUT…….this was after the $137 mil. Novazyme buy out, after John Crowley’s exodus from Genzyme, after the denigration of the transgenic therapy, after the abandonment of Novazyme’s NZ—1001——the “Holy Grail.”    Another eye opener came directly from Dr. Canfield, himself, at a forum of his peers. At this conference he was questioned and admitted that the “success” story of NZ-1001 was only produced once in his lab and never replicated——quite different from this Novazyme quote:

“It also clears massive amounts of glycogen from the muscle cells after just 6 hours. This is a finding that we have repeated several times…”

Was Genzyme “fooled?”  This is how a Genzyme Pompe Project Director phrased it when questioned at a conference.

From what I deduce,  this story, “The Cure,” is just that—-a story!  It is a highly emotional depiction of a family distraught by the devastation of Pompe Disease.  However, the stories of all Pompe patients are emotional and devastating. Ultimately, it is controversial to some of us in the Pompe patient community because it does NOT depict a true picture!  It is an illusion. It is meant to sell books (maybe secure a movie deal), make money, and to portray John Crowley in a heroic fashion.

John Crowley’s heroism is unfounded.  While he was successful in getting treatment for his children, his promises to others went unfulfilled. In effect, his children were given preferential treatment over other patients when they were “selected” for a sibling trial that was opened and closed before others even knew of its existence.

We would be foolish if we did not learn from the past, for history has a way of repeating itself.  Crowley’s endeavors were rewarded once, and perhaps this current trend to honor Crowley is part of a grand scheme to recreate the illusion.

This may be the ultimate plan (we will see), but in the meantime, let it be known that the AMDA does not endorse this book.

Marylyn House