Monday, July 27, 2009

New prez affects Discovery Institute

Wisconsin State Journal
Your Views

Upon the completion of the Wisconsin Institutes for Discovery in December 2010, UW-Madison will take over the “public” Wisconsin Institute for Discovery, while the private, non-profit side, the Morgridge Institute for Research, will share the building.

This private/public arrangement was designed largely in response to President George W. Bush’s executive ban on federal funding for all but a very few embryonic stem cell lines. The ban called for separate labs, equipment and accounting systems to assure that our government was not in any way complicit in the destruction of embryos. With the election of President Obama these ideological barriers and the stigmatization of this science has largely been removed and now these onerous rules are only relics of the past.

Unfortunately this pre-Obama policy environment continues to shape the structure and programmatic research agenda for UW –WID. UW-Madison, supported by public funds, should rectify this situation through reexamination of the mission, structure and program direction of the institute. Special attention should be given to the effects of commingling the public and private institutes and the potential conflicts of interest.

As an advocate for state funding of stem cell research, I see this public discussion as a way to engage patients, their families, seniors and taxpayers to make this a “public” research institute. It’s not just a research issue but a public health one as well.

For more information on stem cell research reform and how you to get involved, see: danecountyalmanac.blogspot.com.

Thursday, July 23, 2009

I need your help!

I need your help!

Will you post my blog address link on your website?

Upon considering the ever increasing role now being played by Web sites and other forms of electronic media I had this idea. I wanted to alert your health advocacy organization to my blog address: danecountyalmanac.blogspot.com. Under one of its categories, “Stem Cell Research Funding Reform” you will find a robust list of recently published articles relating to our national health care crisis and how U.S. funding and other policies currently contribute to this crisis.

As a family advocate for state and federal funding for stem cell research, I am attempting to alert you and your organization to perhaps the most significant policy issue that your organization will have to make during its next strategic planning cycle.

Should we publicly and explicitly declare in our strategic plan mission statement the goal of curing your particular cell-based chronic diseases by some set date, or perhaps more modestly at least at the earliest date possible? Such action will challenge all chronic disease and health advocacy organizations in the weeks and months ahead. Advocating for greater research and health care services alone seems far too narrow and anemic.

Most of my posts are copies of my op-ed articles that have appeared largely in Wisconsin’s state-wide print media and aimed toward rallying state-wide and national organizations like yours toward advocating for persons with chronic cell-based diseases.

Two of my most recent articles concern Wisconsin’s recent National Alliance for Mental Disorders (NAMI) Grading results and an invitation to chronic disease organizations to join our ever growing stem cell coalition. Presently we already have five such state-wide organizations aboard with several others now pending. I am requesting that your local, state and national organization consider placing on its Web site a listing of blog address links that regularly follow and addresses stem cell research as an increasingly important public health issue.

I would hope that such a listing of blog links would include my own and contribute to a national conversation concerning this critical research and country’s health care crisis.

My blog presently includes a list of Action Steps that organizations like yours might consider when reviewing and updating its strategic plan. You will note that this writer now believes that it is time for organizations like yours to move to the next step.

Develop a policy statement which recognizes the potential discovery and development of a cell-based cure for your particular chronic disease and to get out front on this issue beyond supporting federal and state research funding alone. Anything less than an eventual cure for such diseases is from my perspective a disservice to our members who struggle and suffer daily with these diseases.

I hope you will take the time to view my blog and consider this request. Advocacy always begins with the first step. For most organizations that step is building a greater awareness and mutual collaboration and alliances. I hope my blog and many others like them together will help add to our united VOICE.

William R. Benedict, ACSW
bergentown@sbcglobal.net