Sunday, December 19, 2010

Institutes’ hoopla ignores chronically ill

Capital Times - Sunday, December 19, 2010

As a patient advocate for stem cell research I was privileged to attend the Grand Opening of Wisconsin’s Institutes of Discovery (WID). WID is a spacious and remarkably attractive building. A richly deserved sense of accomplishment was in evidence at the event.

We were introduced to the key actors in the building’s initial concept and innovative design. Much time was spent discussing, who actually first had the dream of WID. Was it Governor Doyle or John and Tashia Morgridge? No, well then how about the Wisconsin Alumni Research Foundation’s Carl Gulbrandson or the interim director of the public side of WID, John Wiley? Each speaker who went to the podium modestly and graciously attributed WID’s initial idea to one or more others. Lastly, each of the UW scientists who were selected to locate their lab at WID was introduced and their lab’s specialty celebrated with loud applause from the crowd.

The grand opening of WID was most certainly a UW-Wisconsin signature event and properly celebrated in every way, with one exception: There was no mention of those so loudly touted as one of the chief reasons for WID’s creation back in 2004---those who suffer daily from catastrophic and chronic diseases.

It was in 2004 that Gov. Doyle first hailed what was to become WID “as the creation of a world class stem cell research center.” This appellation of WID given by Doyle now six years ago is in stark contrast with this year’s speeches and media accounts surrounding WID’s dedication.

This glaring omission of those suffering from chronic diseases could certainly not go unnoticed by anyone reading the extensive news articles heralding WID’s celebration or those in attendance at the Grand Opening. If there was ever an example of radically re-writing Wisconsin history, this will have to stand alone.

In news articles beginning in late November of this year and during the Grand Opening ceremonies on December 2nd many reasons for WID’s construction were cited. One speaker referred to WID as an engine for creativity.

Other speakers and writers referred to WID as the heart of collaboration and the interdisciplinary community; a boost to Wisconsin’s economy and job creation; a center for community out-reach and education for the young and seniors; a space to inspire generations to come; and a space for every constituency to gather; the center of medical science and technology, and a trading center of ideas.

Apparently stem cell research committed to curing chronic disease is no longer the Wisconsin Institutes of Discovery’s paramount reason for being. UW indeed will be challenged to win back the trust of those suffering from chronic diseases in Wisconsin.

William R. Benedict is a patient advocate for stem cell research.

Monday, December 13, 2010

UW/media re-writes WID's history - Comment

From: William Benedict
Sent: Monday, December 13, 2010
Subject: UW/media re-writes WID's history

Please read my attached article. I believe the decision by UW to purposely ignore WID's mission to chiefly help bring about a cure for those who suffer daily from debilitating chronic diseases was no accident. Such a total blackout in the media and during the addresses at WID on Dec 2 suggest to me that such decision has recently been written into UW's strategic plan.  I can't imagine how else this commitment could be so totally ignored by those most involved unless it is by some design or intent. If I am correct and I think I am, patients and their families and all advocate group's should be disappointed as I am at such insensitivity, and contact the UW about your concerns NOW. I was disappointed that there was no person selected to speak specifically about those with debilitating diseases at the Opening, and to express the hope that we all have for stem cell research, and for WID particularly, to help bring this about. Respectfully, Bill Benedict




From: "UW Official"
To: William Benedict
Sent: Mon, December 13, 2010
Subject: RE: UW/media re-writes WID's history

Hi Bill: I am sorry if you missed that the entire top floor of the facility is devoted to regenerative medicine and tissue engineering. Jamie Thomson was the first principal scientist hired by the Morgridge Institute for Research and his entire laboratory will be located in the top floor of the new facility. Tom Turgn of the department of chemical engineering who studies tissue engineering will share the top floor with Dr. Thomson and work collaboratively with him.  In addition, one of the stated goals of the Morgridge Institute for Research is “Discovery to Delivery”. The Morgridge Institute for Research will collaborate with the medical school, the hospital and the private sector to realize the practical application of the technologies discovered to benefit patients. There are of course other very important goals of the facility and programs taking residence in the facility and I believe all of that was part of the governor’s vision in 2004. WARF, which is one of the owners of the facility has had a long and strong relationship with the University in helping deliver the technology to the private sector to benefit the public. It is something we constantly focus on. Thanks for your advocacy, Bill. Best regards.

UW Official
Wisconsin Alumni Research Foundation



From: William Benedict
To: "UW Official"
Sent: Mon, December 13, 2010
Subject: Re: UW/media re-writes WID's history

Thanks for your kind response. My article attempted to state only that
in the news articles preceding the Grand Opening and later during the Opening itself, the speakers made little or no references whatsoever about the important role WID could play in using stem cell research for curing chronic diseases. Even though during the early planning for WID these same individuals seemed to promise those who suffer daily from chronic illnesses that WID would play a critical role in helping to realize the patients and their families hopes for some cures in the future.

Because of this fact I believe that others like myself will be disappointed to learn that this was the case. Hopefully both UW, the media and advocates like myself will communicate more openly and clearly in the future. As a citizen let me take this opportunity to thank you for what was otherwise an inspiring occasion. Respectfully yours, William R. Benedict