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 the book. I found Geeta Anand’s portrayal of John Crowley’s venture into Pompe Disease to be not only candid but also well documented.

Before reading the book, I had anticipated an idolized view of John Crowley and his endeavors with Pompe Disease. However, after reading the book, what I perceived was a man that comes across as quite a “snake charmer”……OR is that a charming snake.

I think that all who read this book will be awe struck by the audacious nature of a man whose actions are based on snap judgments – not research and education. It’s chilling to think that this type of personality is perceived by many as a powerhouse figure—an innovator, a motivator, a leader.

John is true to this era—an era where the arrogant “elite” reign in dangerous positions. Their decisions, based only on their own mindset, can have disastrous results for the plebs “beneath” them. Yes, he is a good fit for the Enron Era--lies were told, things were made up, pockets were lined with $. All of this on the pretext of finding “The Cure.”

I remember the chaotic situations that arose during his tenure at Genzyme. There again, John made reckless and ill-informed decisions—decision that could have had disastrous repercussions for the entire Pompe project. Hopefully, this is a lesson learned, rather than one that is to be repeated!

I do commend Genzyme for finally taking the action to reel him in. However, I don't think that Genzyme should have been so quick to "welcome" the publication of "The Cure.”Certainly, Genzyme's business acumen, as documented in this book, leaves a lot to be desired!

"Genzyme Commends New Book for Portraying Challenges Faced by Patients with Pompe Disease and Their Families" -- Genzyme press release August 31, 2006: http://genzyme.com/corp/investors/GENZ%20PR-083106.asp

My opinion,
Marylyn House
AMDA

September 02, 2006

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
AMDA
Acid Maltase Deficiency Assn