THE LONE STAR VOLUNTEERS, AND THE FAMILY OF CURE
By Don C. Reed
As friends of this column know, the past four years have been great fun for me. Not only have I been able to work with amazing people, doing exactly the kind of work I most enjoyed, but I received a part-time stipend from Americans for Cures Foundation for my out-of-state efforts. It was like being paid for vigorous fun.
Today, in the deepening winter of recession, it is much harder for non-profit organizations to gather donations for even part-time staff.
Chances are, I will be working volunteer again for a while.
I have applied to renew my teacher’s credential, and will substitute (ask any teacher what that small hell is like) 2-3 days a week. Subbing exhausts you. Every period is like the first day of school, when a teacher must prove himself, and fight. That is no problem, when the kids are going to be yours all year, because on the first day of school they are a little off-balance, and you just have to take charge immediately. After a few days they realize they can live with you, and teaching becomes a great job, although of course grossly underpaid.
But as a substitute, it is you who are off-balance. The kids are comfortable, and the sub is the outsider. The students mostly come to play, because they know you are not staying. If you intend to actually teach (and I don’t know any other way) it is a war. By the time they realize you intend to be taken seriously, it is the end of the period—and then the next class comes in, and the nightmare begins again—every period, all day, and it drains you, all that emotional fighting.
Unless I can find a grant, I will be doing advocacy work only in my spare time: twenty to thirty hours a week instead of sixty-to-eighty.
This will of course diminish my efficiency—but I have been there before. Part-time volunteer work was what I did in the first decade of the advocacy adventure.
So, what can a part-time volunteer do?
It is easier with a budget, no question: but the vast majority of stem cell research advocates everywhere are zero-budget folks.
Right now, I can think of ten chores that can be done by people without money.
1. develop a state stem cell research funding bill;
2. establish a state “permissions” bill, for scientific freedom;
3. develop and deliver informational presentations to advance awareness;
4. help elect Congressional and Senatorial candidates who back research;
5. support ongoing legislative efforts already begun by other advocates;
6. oppose anti-research laws by speaking/writing/organizing;
7. use Google alerts to keep in touch with regenerative medical progress;
8. support efforts to at least double NIH funding;
9. work to block the annual renewal of the Dickey-Wicker Amendment;
10. respond to articles in the press, either positive or negative.
These are “doable”; I have done them, (with the help of hundreds of hard-working friends) and am trying to do them again, all on a volunteer basis.
Most advocates never receive a salary at all. The most important work of their lives is done “for free”.
Look at the amazing efforts of CAMR, the Coalition for the Advancement of Medical Research, our voice in Washington—I think they have one and a half paid staff—all the rest volunteer their services.
Look at the Texas folks: like Joe and Nina Brown, Judy Haley, Beckie McCleery and other Lone Star volunteers: people like Val, Kathy, Laura, Susan, Chris, Larry, Dianne, Wendy, Bill, Jennifer, Ellen, Cheryl, Gerald, Ralph, Clarence, Michael, Harry and Kent, to name a few.
If any of those endlessly-working people receives a salary, I would be delighted—(talk about justified!)—and, unfortunately, surprised.
These are folks who are willing to drive to the state Capitol in the middle of the night, when hearings may be suddenly called about stem cell issues. In addition to trying to follow and understand the science, and to communicate it to others, including the press, they spend countless hours arguing with legislators all too often under the thumb of the religious right.
Texas is controlled by a party which lets its science policy be determined by an ultra-conservative religious minority: remember, the current Republican party platform calls for the complete elimination of embryonic stem cell research.
It must feel like trying to dig water wells in the Sahara desert.
And yet, the Texan stem cell research community continues to fight.
I remember an old boxer saying, “sometimes you win by just hanging on, waiting for an opportunity.” They do a lot of that in Texas, fighting to defeat rotten bills that would deny the hope of cure to millions, while at the same time trying to pass good bills they know do not have a prayer of passing.
Why do they do it, month after month, year after year? Same reason as always, because their loved ones are at risk. They are fighting for their families, and yours and mine.
For one thing, they understand that cure research is a way to stabilize the economy. They know that of America’s $2.3 trillion medical costs last year, 75% was spent on the care of folks who have incurable (chronic) disease or disability. That mountainous medical bill is a key reason our economy is starting to fail. Cure diabetes? That would save roughly a fifth of a trillion dollars.
They know that every step to advance regenerative medicine not only brings our families closer to safety from disease and disability, but also is a direct help to America’s faltering economic system.
These are far-seeing folks: like the people who built the library in my hometown of Fremont.
If you visit our library sometime, you will find it jam-packed with happy people—probably none of whom ever stop and think, hmmm, how many council meetings had to be sat through, how many government officials had to be approached by unpaid volunteers, (a group called “Friends of the Library”), how many booksales, how many campaigns to try and get funding for this building and its books.
And, one suspects, this is how it has always been: behind every victory are the efforts of many people, uncredited, unpaid; and who may not even get to see their horse come in.
But we know. And when America finally grabs hold of the biomedical revolution, and cure begins to happen, it will be because of people like the Lone Star volunteers.
If you don’t mind working free, (which by definition means part-time, because you have to do something else to pay the rent) there are endless jobs that need doing in your state’s collegiate, legislative, charitable, or business arena.
For me, the first priority is putting pressure on government to fund basic research for cure, laying the ground work for private enterprise, so they can get involved when financially sensible. It may cost as much as a billion dollars to develop a single drug, bringing it from the scientist’s lab to people’s medicine cabinet; it is unreasonable to expect the companies to pay for everyone else’s research as well. Funding basic research is what the public sector does best, from the smallest state funding bill, to the National Institutes of Health, the NIH.
Eventually, the giant corporations will be ”forced” to invest in regenerative medicine. Businesspeople cannot overlook a burgeoning opportunity.
But first, states and national government agencies must to do their share.
And who will exert this pressure on our elected government, in a country which not only allows citizen involvement, but encourages it, depends on it?
That would be us.
We may never meet in person, you and I, never have the chance to shake hands and laugh, hug and have dinner, babble over coffee, share advocate war stories and pictures of our kids.
But we are brothers and sisters in struggle just the same.
We are the family of cure.
Happy New Year!