Against All Odds: Texan Triumph
May 20, 2009 by diverdonreed 

AGAINST ALL ODDS: Texans Fight On, Battling for Research

Advocates have a saying: "Everything we do is impossible!"

It's true, in a way. 

Scientists like Dr. Larry Goldstein of San Diego work with essentially invisible specks in a dish of salt water, trying to find cures for the incurable: like Alzheimer's disease, that cruel memory loss, which can turn a loved one into a stranger: a mother or father with no memory of their own family.

What are the odds in a battle like that? We don't even know yet when Alzheimer's begins in the body, let alone how to fight it- but our scientists soldier on, day after day, long hours in the lab, despite discouragement, lack of funding, and political harassment.

Consider also, the odds against the Texans for the Advancement of Medical Research: TAMR. These research supporters have essentially no money. They have exactly one paid lobbyist, Ellen Arnold- who frequently does not get paid. Ms. Arnold's business sense, fortunately for us all, is overridden by her heart: all too often she fights for free.

Advocates! Texas has people like Judy Haley, Joe and Nina Brown, Beckie McCleery: names to conjure with, folks to remember when times are tough and there seems no hope, in those gloomy dark Novembers of the soul. 

Because what is TAMR up against? 

The nearly unlimited power of the anti-research Religious Right.

Imagine a political opponent for whom money is almost no object. One key component is the Catholic Church, the world's largest property holder. Remember the Michigan struggle to remove anti-science restrictions? Every Catholic family (450,000 in the state) received at least two anti-research DVDs and mailings, not to mention everybody in the state was bombarded by expensive TV ads. Wouldn't you like to have budget resources like that? The Church buildings themselves are sometimes used as meeting places for research opponents. The Bishops send messages to the Churches, which are printed up and handed to the parishioners, who are also lectured at from the pulpit. So that gives the opposition free rent for buildings to organize from-and access to thousands of paid employees-seems to me a violation of the Constitutional separation of Church and State, but it happens anyway.

The Catholic church does enormous amounts of good work and charity; but it is no friend of cure research: having opposed the science of anatomy, surgery, X-rays, vaccination, anesthesia, blood transfusions, more- and this opposition continues today.

The Republican party is enormously influenced by the Religious Right, (Granted, the moderate wing of the GOP is beginning to reassert itself, but the "social conservatives" still hold the upper hand) and Texas is very much Republican state. 

So, forget about research in Texas? Biomedicine, back away, the Lone Star State does not want your new jobs here?

Somebody forgot to explain that to Texas. 

Texan scientists are staying. Texan patients are becoming advocates, and their families with them. Texas Catholics, like Catholics everywhere, are increasingly pro-research, way ahead of their ultra-conservative leadership. 

And TAMR continues its uphill struggle-which they are beginning to win.

Remember that three billion dollar cancer research bill in Texas, pushed by Lance Armstrong? That's a Texas-sized bill, folks! 

Behind the scenes a major wrestling match has been going on, as the Religious Right and its political arm fight desperately to keep any Texas dollars from that bill or others from being spent on early stem cell research. 

Recently, a bill AND a rider attached to the Texas state budget would have prohibited embryonic stem cell research in Texas.

But TAMR was involved as usual, working grinding long hours, on the phone till their ears ached, typing emails till they got so tired sometimes the old zzzzzzzzzzzzz key trick would happen, when you fall asleep at the keyboard and the second finger on the left hand presses the wrong key.
TAMR reached out to friends. They asked scientists to set aside their work, inform themselves on the issues, and make phone calls.

Most scientists hate politics. They just want to do the work and be left alone.
But if they don't help with the political decisions, the opponents of research will make those decisions for them.

I know at least a dozen scientists who set aside their microscopes and made phone calls to legislative aides and Senators and Representatives in Texas.

One of those who stood up and was counted was the aforementioned Dr. Larry Goldstein of California, who set aside his research, and flew to Texas.

There he met with key Texas Senators, updating them on the progress in our field, sharing facts in his usual clear and accurate way. (If you ever get a chance to hear Larry Goldstein talk, don't miss it-excellent speaker.)

And when the smoke of battle had cleared.

Senator Steven Ogden, Republican author of both an anti-research bill and sn anti-research rider, removed them from consideration. (He replaced them with a bill that "requires reporting of stem cell work from institutions in Texas", according to TAMR's Judy Haley. The bill sounds harmless enough, though it requires watching, lest it be used as some form of intimidation; still it is a whole lot better than the two prohibition attempts before.)

Folks, this is a tremendous victory. What it means is, sooner or later, Texas research money will become available for promising avenues to cure.

This is exactly the kind of interstate cooperation we must do, if our loved ones are to get well. No state should be allowed to fight alone. They can and must do the bulk of the labor, as TAMR always does; but we must also stick together, or be run over by the opponents of research. 

CAMR (the Coalition for the Advancement of Medical Research) is our national leader, and they must be a part of every struggle. But they cannot do everything. We in the smaller groups have to reach out to each other and help, consistently. If Texas wins, we win: like the Three Musketeers motto, "all for one, and one for all". 

Patient advocates have to work. Politicians have to put up with us. And scientists must get involved.

When we work together, miracles are possible; and I believe we will see some, in our time.

Now, here's some updates from TAMR.

Dear friends and fellow advocates,
Tomorrow you will read in the newspapers about what a difference one voice added to one more voice can make! We can't thank you enough for giving TAMR the pleasure of sending the following Press Release out today. It is with much gratitude that we thank all of you who made a special effort to take time out of your day to make those incessant calls and pass the emails to your friends and family. It is with much gratitude that we thank those of you who took the time to go to the Capitol to talk with the legislators, sometimes driving in and back for a 20 minute visit, or all the scientists, the economist who wrote the economic study and all advocates who flew in and waited hours to testify or visit with a legislator. It is with much gratitude that we thank those of you who wrote letters to the editors and our Board of Directors who made endless, seemingly continuous conference calls. And how grateful we are to those of you who have the good fortune to live in Austin and who spent full days at the Capitol making calls, passing out letters and pertinent information and monitoring endless hours of committee meetings waiting to make sure we were aware of any bill or amendment that might be detrimental to our cause. Last, but certainly not the least, we thank Ellen Arnold, our lobbyist, who has to be the best in the world and TAMR is more than fortunate to have her on our team!

We are elated; but there are still 5 pages of bills that we are following to make certain they remain "clean". So we will not relax our vigil until June 1st, when the House and Senate doors are closed and locked. But this deserves a BIG THANK YOU.
Joe A. Brown
TAMR, President

FOR IMMEDIATE RELEASE CONTACT: Joe Brown (713) 478-9091
May 19, 2009 

TEXANS FOR ADVANCEMENT OF MEDICAL RESEARCH (TAMR) APPLAUDS THE CONFERENCE COMMITTEE FOR REMOVING STEM CELL RESEARCH BAN FROM THE STATE BUDGET

Setting up a budget to spend state dollars, including the funding for academic institutions across the state, is the most critical bill of each legislative Session. But this year's version, Senate Bill 1, took on a problematic tone with a rider attached that would have chased potentially life-saving stem cell research-believed by most scientists and physicians to be the future of medicine-out of the state.

Senate Finance Committee Chairman Steve Ogden introduced the rider, explaining that it would "only" ban state dollars from funding embryonic stem cell research. But the potential was broader. Institutions receiving state dollars (in other words: all our academic institutions in the state, both public and private) would risk losing state funding if embryonic stem cell research was conducted within their facilities. Research, regardless of the source of funding, scientists trained or funded for any project with state funds could not work with the embryonic cells. "Even ongoing work with the 'approved Bush lines' would have to be shut down. The chilling effect would create too much uncertainty for risk-averse institutions, and stem cell research (and researchers) would flee to friendly environments in other states," said Judy Haley, TAMR co-founder. 

As the ramifications of such far-reaching consequences, and the will of a majority of Conference Committee members as well as supporters of the research from across the state contacting Senator Ogden, he offered to amend the rider. For some the issue was clear: cells that are currently being discarded as medical waste should not be discarded, but used to search for cures for the terrible diseases like diabetes, Parkinson's, and cancer. For others, the lack of a public hearing to properly debate stem cell research and make sure that the issues are clearly articulated made the rider-ban unacceptable. 

Therefore, Senator Ogden announced in this morning's conference committee meeting that, "We really couldn't come to a consensus" so the bill will be silent on the stem cell issue, and the stem cell rider was removed from the budget. 

Texans for Advancement of Medical Research (TAMR) commends Senator Ogden and the Budget Conferees for the decision to strip the ban on stem cell research out of the state budget. TAMR President Joe Brown said, "Legislators heard the message-loud and clear-from a public that supports this cutting edge research, and does not want to lose the benefits of having all forms of stem cell research being vigorously pursued in Texas. They know that research today often translates into life-saving treatments in the years ahead." 

In addition to the access to care issues, Dr. Bernard Weinstein wrote an economic impact study highlighting damage to the state's economy that such policy would create. In this time of economic difficulty, with our world-renowned medical facilities among the most robust industries in the state and with the push to attract more bio-tech companies to Texas, TAMR applauds the wisdom of the Budget Conference Committee, and hopes that Texas will soon see legislation protecting all ethical forms of stem cell research. 

TAMR is an organization of scientists, physicians, leading health groups, and individuals who support biomedical research in regenerative medicine for the express purpose of curing diseases and alleviating suffering. 

TAMR DESPERATELY NEEDS YOUR FINANCIAL SUPPORT! 

TAMR has no staff-we are all volunteers who have spent untold hours and have self-funded supplies, mailings, trips to meet with legislators and to give presentations around the state because we believe in the potential stem cell research holds for our families and yours, as well as for the economy of Texas.
PLEASE HELP! 

Give us a hand.reach into your pocket.
__
Click here and make a donation online
or send a check to:
Texans for Advancement of Medical Research or TAMR
P.O. Box 19543
Houston, TX 77224-9543
(If you have forgotten how TAMR fought the battle since 2003, see below.)
TAMR's all-volunteer army of grassroots advocates put a human face
on the fight to win the battle that is holding so many lives hostage.
TAMR has:
? Met with elected officials on an on-going basis
? Tracked hundreds of stem cell-related bills
? Monitored hundreds of hearings and all Floor debate in both the House and Senate
? Hosted Educational Forums for Legislative Staff
? Hosted Educational Forums for Freshman Legislators
? Conducted mail campaigns throughout the interims, providing educational documents as well as letters of support for esc research from multiple associations - including Hadassah, PAN JDRF, TAMR, ADA, NMSS
? Alerted Legislative Leadership Team for possible amendment efforts on the House Floor and prepared legislators for debate
? Coordinated efforts of interested organizations and associations
? Garnered publicity through press conferences, press briefings, letters to the editor
? Served as a resource to help write bills and dozens of amendments
? Represented Texans in hearings on both pro-stem cell research and anti-stem cell research legislation
? Gathered thousands of letters of support
? Organized Texans to submit 452 witness cards in support of stem cell bills
? Helped prepare testimonies given in support of stem cell bills
? Coordinated Legislative Days at the Capitol
? Supplied speakers to give PowerPoint educational presentations in churches, synagogues, political groups, health organizations, etc.
? Spoke on the radio, TV and in newspapers in over 36 media outlets from around the state.

Posted in Uncategorized | Tagged stem cell research, Texas | No Comments »

Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation
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